tag:blogger.com,1999:blog-56504772143999162682024-03-12T19:03:17.488-03:00A broken body's JourneyAt 36 years old with two small children I was diagnosed with Young Onset Parkinsons Disease. This is the account of my journey from onset to diagnosis and beyond.
I have two choices. I can sit and feel sorry for myself and get worse fast, or I can dust myself off and fight. I think l will choose the latter!
So bring it on Parkinsons, bring it on!A Broken Body's Journeyhttp://www.blogger.com/profile/15391303465189571744noreply@blogger.comBlogger76125tag:blogger.com,1999:blog-5650477214399916268.post-1927413829913382512018-10-10T05:15:00.002-03:002018-10-10T05:15:54.026-03:00Sometimes you just have to take a leap of faith!My journey with Parkinson's disease is certainly an interesting one. There's been many twists and turns, some very fast downhills, a bit of bumpy off road-ing and some steep mountains to climb. But it's not been without some beautiful scenery along the way.<br />
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As I'm into my 5th year of living with YOPD and about to turn 41 years old in a couple of days it's oddly a journey that in one hand feels like it just started and yet feels like it commenced a million years ago at the same time. I still have days where I question myself thinking "maybe I don't really have it?" although they are fewer and far between then those thoughts once were. Usually a moment will come and slap me in the face and remind me that yup, you have it! <br />
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One such moment is when medication isn't working the greatest or you're required to come off meds, like I recently did as part of my DBS (Deep Brain Stimulation) testing. A couple weeks ago I travelled to Halifax, NS for three days on the road to getting approved (or not) to have this life changing brain surgery. I spent an hour in an MRI machine on day one, a difficult task even for a Parkie that doesn't suffer greatly with tremors when medicated, as staying still is not a Parkie's friend, for me it causes great stiffness, pain and eventually will cause tremors to come out. I took a double dose of levodopa an hour before in hopes to stay still yet hoping not too much to cause any dyskinesia. I managed to complete all the scans relatively easy, however when taken out of the machine had stayed still for so long I was essentially frozen in that position. It took two people to get me to a seated position and a bit of time to get me on my feet. Day two was about 5.5 hours spent with the neuro psychologist and his team for psychological assessments, cognitive tests and memory tests. It was mentally exhausting and I joked afterwards that if you ever want to feel like a complete imbecile go have this done. It was often frustrating knowing you were getting the answer wrong but yet not knowing what the right one was. And my what poker faces that team can maintain, no indications whatsoever if you passed or failed. Day three was then the dreaded "on/off" meds control tests. Where you stop taking all Parkinson's medication 12 hours prior to your 8am arrival at the hospital. One would think that's not so bad most of that time you'd be sleeping. Well, first of all I am awake 20 hours a day, on a day like today I've been awake since 3am after only 3 hours of sleep. I take levodopa every 3 hours that I am awake. So missing meds from 8pm to 8am was a total of 15 pills, a combination of regular levodopa, a controlled release form I take before bed and a dopamine agonist. Needless to say the result come morning is actually quite shocking. One of those reminders that, yup, you cannot function without meds and thank God you have them! Rather than any further explanation I'll let a short clip of some of the testing taken that morning do the talking. The top video's are me off meds and the bottom is a mere one hour later after taking them. The difference is quite shocking even to me sometimes!<br />
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I'm currently waiting for one more test, a daT scan as the last piece of the puzzle before I get my final answer on if I'm approved to get DBS or not. What I hope to be my third and final #YesToDBS the team does round table sessions where they review video footage and tests results bi-monthly and the next one is set for mid November. If by some small miracle I get this scan done previous to that I will make that session and have an answer soon after. If not I'll be in the queue for the next session mid January. As each day passes and no call for a date for the scan my hope to have an answer in 2018 fades with reality telling me it'll be an answer I'll not receive until the new year. But for now I must just stay positive, focused and have faith that it'll all work out.<br />
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Now speaking of a faith, sometimes we just have to dive in with two feet and take a leap of faith! Now this can be trusting something, trusting that God has a plan or a variety of different things. But how about taking a leap out of an airplane? LOL Do you have a bucket list? I'm sure most people do in some form, a list of things they hope to accomplish during their time here on earth? Hopefully top of that list is simply to be kind, teach our children to be kind, to leave a mark on this world of a positive nature. To live a life you can be proud of, one where you judge less, love more. I know this is something I truly strive for and pray that my children learn from me to always lend a helping hand, always help others, be compassionate, genuine, authentic people who help others when needed. All that aside many times our bucket lists have adventurous things on them. One of mine was to skydive some day. Something that's easy to say but will you actually do it or is it just a cool thing to list? Well, one of the things you are not allowed to do if you have DBS is skydive. Apparently velocity and wires in your brain are a bad combination and the harness you wear would press directly on the area of your chest the neuro transmitter/battery box would be implanted. So in a leap of faith that I WILL get approved for DBS, as opposed to hoping and waiting I made the decision in August that I was going to do it! I was gonna say screw you Parkinson's and to hell with you Dystonia and to heck with tremors from fear and adrenaline and to heck with all reservations I may have and I was going to jump out of a plane. When in the air with Dave the guy from Atlantic School of Skydiving he asked me why I wanted to skydive? My answer was simple, it's always been something I thought would be cool and wanted to do (but deep down figured I never would), that I was in the process of trying to get approved for brain surgery and if I wanted to do it I had to before hand. And most importantly because I want to teach my children that they can always overcome their fears, that they should never let anything hold them back from doing something they really want to do. That the 'sky is the limit' on what they can accomplish. I want them to grow up seeing their mother fight on, to do things I want and not let PD or anything else stand in the way. To never say "I can't" but instead replace that with "I'll try".<br />
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And with all that in mind, this Parkie jumped out of a plane and although terrifying to get out of it, the moment you were soaring through the sky, like a bird flying all fear was gone and it was just spectacular and amazing. I'm so very glad I did it! <br />
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So my friends, take a leap of faith. Trust that there are no coincidences in life, no accidents. That even the worst of things or moments can have joy in you search for it. Take a leap of faith...Go for it and try and get approved for brain surgery even though that's terrifying, but the result can be amazing. Try a boxing class even if you think you can't cause you're using a walker, you may be surprised at the results. Step outside your comfort zone and do something crazy, do something that your head tells you is beyond your limits. Leap into the air out of a plane at 10,000 feet! Whatever your leap of faith is, don't let fear or the voice in your head tell you not to do something you really want or feel compelled to try. Realize you are stronger and more courageous than you give yourself credit for whether that be something small or something huge!<br />
<br />A Broken Body's Journeyhttp://www.blogger.com/profile/15391303465189571744noreply@blogger.com1tag:blogger.com,1999:blog-5650477214399916268.post-69963672828706459532018-06-26T04:16:00.002-03:002018-06-26T04:16:14.585-03:00Sometimes one remains quiet when there's nothing positive to sayThis is definitely a long overdue post and the longest I've ever gone without writing. To my faithful readers I apologize. But the hard truth is that I was in a bit of a rut with alot of Parkinson's related turmoil in my life. I've been simply treading water and dealing with each problem as it arose and was in a state of mind with not alot of positivity. Therefore I remained silent in my little bubble. I shall try and recap in a short form as I move forward.<br />
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Back in the spring I had hit an all time high of weight gain, larger than with my first pregnancy where everyone thought I was carrying a baby elephant, yet still working out 5/6 times a week like a crazy person. Gaining 2-3 pounds every week consistently and dealing with severe swelling all over my body but particularly my legs, ankles and feet. The culprit... Pramipexole. The medication I'd been on three years that I took in between levodopa doses to help level off the crashes and make "off" times less severe, and the med that also helped my painful dystonia tremendously. The decision was made that my edema had become so severe it was at a point where it was dangerous and I had to come off that medication despite how well it worked. Between my movement disorder neurologist and my family Doctor we tried everything possible to avoid going off this med to no avail. So started an 8 week process to wean off the medication I was at the maximum allowable does of. In a nutshell life got rough, exercising became more difficult, even walking was painful. It was not a fun process by any stretch of the imagination.<br />
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Once fully off pramipexole it was time to start a replacement medication combined with increased frequency of levodopa intake which also caused the starts of dyskenesia which is also an unpleasant side effect. I started taking Bromocriptime another dopamine agonist and the day I started the new medication with the plan for 3 weeks of increases to get to the full dose I had a negative reaction o the medication and was sick beyond words. I couldn't function within 2 hours I had every possible side effect listed. I spent my day feeling like death and on the phone multiple times with my pharmacist and my neuro team in New Brunswick. The decision was made to stop the medication entirely until side effects went away and then start again at 1/4 of the original starting dose and space out the intervals to much longer in between dose increases. I'm now I think 8 weeks in and still not at the full dose but should be in another week or so.<br />
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During this time of going off pramipexole and trying to start the new med the dystonia in my arms, hands, legs and feet got quite bad. I was no longer able to play guitar or fiddle, holding drum sticks could only be done for a few minutes and playing piano was although still doable harder than before. Music is my happy place, I turned my garage into a music room, taught myself how to play various instruments and would get lost in music. No stress, no worrying just peace. Not being able to do that which had many more benefits like maintaining cognitive function and memory etc... was devastating to me and put me farther into a rut of sadness. My cane was used more, I could do less with my kids and to say I was down in the dumps would be an understatement. The only good thing that had come thus far from all of this was the fact that I finally stopped gaining weight after having the scale increase every week for months. I've only lost 5 pounds so far of the 52 gained but at least I'm no longer growing in size.<br />
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Then my beautiful girls were hit with the stomach flu just a couple weeks after starting the new med and it's bad reactions. Of course I tried to not get it but alas Mom was hit and vomiting started around midnight one Thursday evening. After having thrown up my night time meds and being unable to keep anything down let alone medication I was in rough shape. You see while medicated the majority of the time people are shocked to hear I have Parkinsons I'm usually in pretty good stature, my meds work very good. I do use a cane often during off times which surprises most people when they see me using it. However 20-30 mins later when the next pill kicks in I'm usually good to go. However, me unmediated is an entirely different, alarmingly scary picture. Combine that with the weakness and fatigue that comes with the stomach flu and it's a recipe for disaster. I won't get into the gory details or the degrading moments of it but the result was that by 9 am the following morning there was an ambulance in my driveway and it took 3 EMS workers to get me onto a stretcher while my poor sweet 6 year old Izabella cried hysterically in fear of why these strange people were taking Mom away (her sister was at school). I ended up in hospital for about 30 hours before IV, meds, anti nausea meds that I can actually take had all kicked in enough that it was safe for me to be home. Upon arrival it took two nurses bearing essentially all my weight to get me to my feet, 30 hours later with levodopa back in my system I was slowly getting up and walking by myself using my cane. One of the nurses commented to the Doctor that this "levodopa medication is a miracle med"... Well yes, yes it most certainly is provided it's in your system.<br />
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So over the course of 3 months life went to hell and a hand basket quite rapidly. I pondered writing multiple times but just didn't have anything good to say. And then amidst all this turmoil I got the call with an appointment date for my DBS consult with the neurosurgeon in Halifax I'd been waiting for. Hope was coming. Fear of rejection came with that too, as I needed a 'YES' to continue testing at that appointment. With a great amount of nerves I ventured to the neighboring province for the consult, sick to my stomach with fear they'd say no. However I was thrilled and overwhelmed to the point of tears (it had been a long few months) when they said YES! That Yes they thought I was a good candidate for DBS and wanted to continue with the testing. Testing which involves another control test (going off meds, then back on which I had done last August), a series of MRI's, DaT scan's and a 6 hour day with a neuro psychologists team for cognitive, memory and other psych testing. After which the team in Halifax along with my team in New Brunswick will decide if I get the final YES to DBS (Deep Brain Stimulation) and get an actual surgery date. It's all rather overwhelming to be trying so hard to get brain surgery. But the reality is that even if it only worked well to treat my Parkinsons and Dystonia for 10 years I want desperatly those 10 good years to be now while my kids are young. That could potentially bring me at least to my eldest daughter being 20 and youngest 17, it would give me renewed ability to play with them and do the things they'll get to fill their memory banks with now while it's important. I'm thankful to have just gotten word yesterday I'll be back in Halifax September 25th and 26th for part if not all of the required testing. From then forward I pray for a final YES to come. If so I will most likely either end 2018 or start off the new year with renewed hope and a crazy brain surgery!<br />
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I'm going to say that depite the roller coaster I've lived on the last few months I am getting back to my kick some ass mindset. I'm starting to be able to play guitar a bit again thankfully, DBS is a real potential on the horizon, the new meds although they do not work as well are helping, I've found the right timing on levodopa to get the most benefit with least amount of dyskenesia possible. I think things are looking up again despite my feelings of life and Parkinsons just totally defeating me so far this year. But I'm reminded of something I said in the past that I actually have inscribed on one of my canes. "Admitting defeat is not failure if the goal remains the same, it simply means the path to get there has changed." So I'm happy to say I'm Back! I'm not defeated, I may have had a rough go but there was light at the end of the tunnel as I crawled through a bit of darkness and although I know there are likely more dark tunnels ahead I know there will always be that glimmer of light to look towards and crawl towards until you get to the other side.<br />
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An interview I did recently about the process to getting approved for DBS</div>
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A Broken Body's Journeyhttp://www.blogger.com/profile/15391303465189571744noreply@blogger.com1tag:blogger.com,1999:blog-5650477214399916268.post-46230290587319190432018-02-28T10:07:00.002-04:002018-02-28T10:07:16.030-04:00When your meds work against you....What is one to do when the medication you desperately need starts working against you and the side effects are severe enough you need to stop taking it? Well for someone with Parkinson's that relies on said medication in order to move, walk and function as a whole it's a pretty scary thought.<br />
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This is the situation I'm in right now. I've been taking levodopa the gold standard treatment for Parkinson's for almost 5 years now. When I first heard the words "I think you have Young Onset Parkinson's Disease" back in April of 2013 I was quickly referred to my Movement Disorder Neurologist in Saint John, NB. He then started me on 4 levodopa/carbidopa 100/25's a day. It was like a miracle. I could move again, I could walk easily, I could get out of bed. Fast forward to today and although to an outsider I probably 95% of the time look the same as I did after that miracle, I have had to drastically increase and add medications to maintain that appearance. I now take those levodopa's every 4 hours I'm awake which is typically 19/20 hours a day. In between those doses I take Pramipexole (or Mirapex), the maximum dose of 1.5mg three times a day. This medication helps the pain from Dystonia I suffer with making it easier to walk due to having it in my calves, causing pain in my feet and gives me the ability to play music and do things with my hands as I also have it in my hands and forearms. It also helps level off my levodopa crashes, so my "off" times aren't as severe. My levodopa typically works well only for about 2 hours, but I only take it every four, so it helps the crash not be so severe. And last but not least I take a double dose of controlled release levodopa at bedtime so that I'm able to move a bit easier in the morning.<br />
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So what's the issue here? Well Pramipexole can cause swelling, it according to my neuro can get so severe in people it can break the skin open and it can hit sometimes long after you've ever started taking it. I started to experience swelling particularly in my feet but also hands back last June. Its been consistently getting worse. In addition to the swelling I've been gaining weight at an alarming rate. In five months I've gained just shy of 50lbs, so I'm consistently gaining about 10lbs a month. Now the kicker is I work out 6 days a week, extremely high intensity. I've also grown 3 dress sizes in this time. Now I don't workout for a size, I do it to slow progression and alleviate symptoms, however it's very disheartening to be growing at an alarming rate. There are days I feel so big and 'squishy' that I wonder if I could get an acting gig as the good year blimp.<br />
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So I recently went to my doctor about the weight gain and it was determined that I have Hypothyroidism. Yup, add that to the ever growing list for this lemon of a body of mine. Parkinsons, Dystonia, Interstitial Cystitis, Arthritis and now Thyroid issues. I tell ya, 40 never looked so good! I was started on thyroid medication and I return March 13th for more bloodwork to check levels and adjust meds as needed. So, the swelling could be from my meds, thyroid issues or a double whammy from both. Regardless it's getting increasingly worse and painful as it's tight. I took the video that's below so I could show my family doctor & neurologist. Upon sending it they called me in to my family docs office and although it's most likely a result of pramipexole they have ordered an echo cardio gram to make sure my heart is pumping properly and the valves all working as they should as the swelling when at it's worst is severe and considered a level 3 pitted edema. You'll see what that means when you watch the video. I left there being told it could take 4-8 weeks to get the test done and for now not to worry about it unless the swelling starts to become as severe when I first get up in the morning as it is end of day.<br />
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I admit I was feeling slightly defeated, but figured I'd not panic for now. Until.... I got a response from my PD doctor in New Brunswick's nurse. She advised me she had discussed it with him, asked if my family doctor had seem my legs asked for the doses of thyroid meds etc... and said that given the severity I will have to wean off the pramipexole and that once my thyroid levels become normal again they may be able to try me on it again to test if the swelling was thyroid or med. She admitted in the email that my Parkinson's will most likely become worse when going off the med. Worse? Well, lets just say I lost it. I don't get down too often or panic easily but I NEED those meds, there's a reason I'm on the maximum dose. It's the only treatment that works for Dystonia and enables me to exercise and have reduced pain and ability to walk better. I tried botox injections, they were horrifically painful to get and it did not work. The next resort is Deep Brain Stimulation (DBS) which I am in the candidacy stage of however if I pass all the tests and get approved it will most likely not happen until mid to end of year of 2019. That's still a long time away. Without that medication I admit I am clean terrified. I cried and cried at the thought of what life might be like without this med, remembering the pain and how hard things were when I first started on it and each time I needed to increase the dose. My fear is that the pain will be so severe in my feet because of my twisted calves that I won't be able to exercise, that the crashes from my levodopa will be so severe I will possibly need my cane all the time as opposed to a few minutes here and there in between doses and that I may have to yet again increase my levodopa frequency and in turn develop the dyskenesia side effect. No matter how I spin it or look at it, it's a scary thought and it's not good.<br />
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However obviously the swelling is more dangerous than the decline in my abilities or they wouldn't be suggesting it. I'm anxiously waiting a response on how to wean from them and to address my fears and concerns about coming off the med I expressed. I admit I'm frustrated at alot of things, that I'm the biggest I've ever been in my life and it seems to be for the most part out of my control, that I just can't seem to catch a break with this lemon of a body of mine and at the length of time it takes to figure things out. I'm angry because the 'shit pile' seems to be ever growing despite the fact that I bust my ass to do everything I'm told will help me and stay positive despite the challenges I face. I'm just overall pretty pissed off right now. But I also know that these negative emotions will do me or my situation no good. They will exasperate my PD symptoms and my emotional well being will diminish. So instead I must stay focused, put on my poker face, do some research and even though the hand I've been dealt is a crappy one I won't fold, I'll call it's bluff instead. I will put my big girl pants on (even though they are way too large these days Ha!) and fight on, stay determined and focused on what I need to do to improve things. I will wrap up my pitty party and bounce back like a bouncy ball does and will figure this all out one way or another.<br />
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One things for certain I will keep doing the things I love. I joke that I'm the Queen of modification, I modify how I hold my bow when playing fiddle, I modify my workouts so they work for me, I modify a ton of stuff. I'll keep finding ways to exercise and play my guitar, fiddle, piano etc... even if it's painful because those are my happy things. I got this, I'll figure it all out in due time!<br />
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For now I shall remember these posts among my frustrations:</div>
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<a href="http://natashachronicles.blogspot.ca/2015/05/if-parkinsons-is-gift-that-keeps-giving.html">Gift that keeps giving</a></div>
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<a href="http://natashachronicles.blogspot.ca/2016/12/its-all-about-perspective.html">It's all about perspective</a></div>
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<a href="http://natashachronicles.blogspot.ca/2016/07/courage-is-dealing-with-one-loss-after.html">Courage</a></div>
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<a href="http://natashachronicles.blogspot.ca/2018/01/may-2018-be-year-to-embrace-change.html">Embrace Change</a></div>
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Visit My Facebook Page: <a href="http://www.facebook.com/BrokenBodysJourney">www.facebook.com/BrokenBodysJourney</a></div>
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Subscribe to my YouTube Channel: <a href="https://www.youtube.com/channel/UC1j96wgdc_JiNIrMgeTZjIA/featured?view_as=subscriber">Natasha 'Parkie' McCarthy</a></div>
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A Broken Body's Journeyhttp://www.blogger.com/profile/15391303465189571744noreply@blogger.com2tag:blogger.com,1999:blog-5650477214399916268.post-74626047378958045762018-01-06T09:10:00.000-04:002018-01-06T09:10:43.333-04:00May 2018 be the year to embrace change, transform & fly....<div class="separator" style="clear: both; text-align: center;">
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As we have begun a new year we reflect on what life brought our way in the one we just closed the book on. We either tend to focus on the blessings, the wonderful things that happened or we are glad to kick the year to the curb as we remember the struggles and challenges it brought. I like to try and find the balance between the two, because as I always say we must find the joy in the journey. It's always there, but sometimes you must look harder to find it.<br />
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As I close 2017's book and start a new one this year, 12 new chapters to be written and 12 old chapters to reflect on I remember the butterfly. Butterflies have become my thing, my metaphor of life. As I've said before to me they symbolize a catalytic moment in life, death, divorce, tragedy of some sort or in many of our cases diagnosis of a disease like Parkinsons. We go through the stages in these catalytic moments similar to grief which tend to be Denial, Anger, Bargaining, Depression and Acceptance. Those stages are represented by the journey a caterpillar embarks on as it leaves the light bound for darkness, isolation & fear only to emerge stronger & more beautiful than it could ever have imagined. As I reflect on the struggles of any given day or the past year I focus on this process and how any obstacles that come into our life are full of lessons, give us strength, courage and determination to forge on.<br />
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The past year had many blessings and joyful times. Simple moments & memories made with my two young girls. Adventures camping with them, trips to the beach, celebrations of their birthdays and me hitting my 40th year of life. Date nights and memories made with my wonderful and supportive husband, great times with a handful of wonderful friends that I hold close and am grateful for always. Memories, milestones, missions accomplished, goals crushed and alot of wonderful things. However like any year there were heartaches, the loss of a beautiful soul, my dear friend Caitlin after a courageous battle against cancer. My 9 year old daughter developing severe anxiety, panic attacks & separation anxiety all stemming from worry about her mother. (Insert knife through heart) My own progression of PD & Dystonia & the need for a cane during "off" times, wheelchair placard for my car, inability to exercise the way I used to etc... Discussions and the start of a lengthy process to see if I can get Deep Brain Stimulation (yes, brain surgery) for treatment of these progressive neurological diseases I live with. Coming to terms with the fact that my hard working husband who works for weeks at a time on the complete opposite side of the country needs to soon come home and live & work here. And the stresses of making that happen like being able to afford for him to return to school to take a new trade and afford my medical expenses when he leaves his job which average $600/month right now. Getting sick with the flu and being unable to keep meds down and getting a first hand glimpse of what Parkinsons Disease has done to me and what life would be like without medications, which scared the hell out of me. That's just to name a few of the challenges 2017 brought. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIlM-7X_uV6D-xvyJUThklT9ZJMO6J7GJ6fPCJty8V7bcTDuC3s4JKoTH3XJlAN-XA9vHPpeS3d4_sMzQLP_DYN_UhySC5ujkN_dZN-8-bT6B_stN4qN95nJCu5F3R4xNBbXZpcoqAf84b/s1600/images.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="256" data-original-width="197" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIlM-7X_uV6D-xvyJUThklT9ZJMO6J7GJ6fPCJty8V7bcTDuC3s4JKoTH3XJlAN-XA9vHPpeS3d4_sMzQLP_DYN_UhySC5ujkN_dZN-8-bT6B_stN4qN95nJCu5F3R4xNBbXZpcoqAf84b/s1600/images.png" /></a>How we cope and deal with all these things that are often painful and completely out of our control is a choice. We can choose to focus on the negative, wallow in our own sorrow, isolate and get depressed and stay cocooned inevitably or we can put on the boxing gloves and fight our way out stronger, better & determined. When we choose that option we can reflect to learn lessons from those obstacles, see what we could have done differently in how we reacted, find what good came from those situations. Because after all life is all about balance. Great things can happen to us but we pay for them in some way if you dig deep and look for it you'll see what I mean. Just like the bad things that happen to us there's much good to come from it if you change your perspective on how you see it. It's like the great Muhammad Ali who also had Parkinsons said... "Float like a butterfly, but sting like a bee" I see this as be gracious, take the time to see the beauty in things, take what comes your way but always remain fierce, always fight on, always stay focused on the end goal.<br />
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So as a new year is upon us, a new book ready to be written, 12 new chapters full of potential in your story ready to unfold how will you choose to write it? How will you choose to have the main character react when life throws a challenge into the story? How will you choose your character to respond to the joyful things in life? How will your character live for all 365 pages of this years 12 chapter book of life? <br />
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I personally pray that I always have the courage to write my story my own way, to never change a single word for fear of it not being what someone else wants to read. That my story will touch someone, inspire someone, teach something to one of it's readers but most importantly that it will keep me focused, grounded, honest and that I'll find inspiration in myself, continue to find the determination required to fly and keep finding the strength to write the best story I possibly can day in and day out. I pray it's a book that someday my 6 & 9 year old girls are proud to read, a book that shows them to never give up no matter how hard the struggle may be. I will write my story, my way one page at a time focusing on the joy and learning from the pain.<br />
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Some of 2017's most popular posts on A Broken Bodys Journey:</div>
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<a href="http://natashachronicles.blogspot.ca/2017/06/dig-deep-show-parkinsons-whos-boss.html">Dig Deep & Show Parkinsons Who's Boss</a></div>
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<a href="http://natashachronicles.blogspot.ca/2017/10/admitting-defeat-isnt-failure-as-long.html">Admitting defeat isn't failure as long as the goal remains the same, it just means the path to get there has changed</a></div>
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<a href="http://natashachronicles.blogspot.ca/2017/01/mental-health-parkinsons-disease.html">Mental Health & Parkinsons</a><a href="http://natashachronicles.blogspot.ca/2017/05/neurological-music-therapy-how-it-can.html">Neurological Music Therapy & how it can benefit PD</a></div>
A Broken Body's Journeyhttp://www.blogger.com/profile/15391303465189571744noreply@blogger.com4tag:blogger.com,1999:blog-5650477214399916268.post-74395609778393893062017-12-04T22:46:00.000-04:002017-12-05T06:55:36.714-04:00Scream, Kick, Cry, Punch something & RepeatDo you ever feel like you're on a viscous cycle like that? Stuck in one of those revolving doors where you go from happy, to angry to sad, to mad and it just keeps spinning and you can't seem to get out at the happy exit? I think we all have times like these, times when life just seems to think that when you say to it that things can't get any worse, somehow it thinks that's a challenge! So what is one to do? You can give up but what good's that going to do? Or you can put on the gloves and punch something, get your anger our and face another day!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyFzVSmgurTLuzdIjSwAv5gk1xpV_SsVYyeO3oCFTDs7hm_pU4rPrW_kc9cFgcV3zGIkMxcyyxIWk0MwhhFgYYlywJIb16PREMrvYz0Nh68CouTRb_QnCqqzNFE9J9AGagF8UL2bGypIBf/s1600/download1.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="225" data-original-width="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyFzVSmgurTLuzdIjSwAv5gk1xpV_SsVYyeO3oCFTDs7hm_pU4rPrW_kc9cFgcV3zGIkMxcyyxIWk0MwhhFgYYlywJIb16PREMrvYz0Nh68CouTRb_QnCqqzNFE9J9AGagF8UL2bGypIBf/s1600/download1.png" /></a> Now this is a fine line balancing act sometimes when you're living with constant challenges whatever they may be. For us Parkies it can be quite the juggling act some days because we tend to put on a brave face for the world, take our meds and be seen as doing great despite living with a progressive neuro degenerative disease when behind closed doors we have moments where you just hide and cry. Sometimes when you are constantly trying to be strong so you don't worry your kids, your spouse, your family, your friends you break from the burden and feel like your failing. Yes I have those moments, hate admitting it but I do and lately I tend to have the "this isn't fair" thought in my head alot when in reality thinking that way does nothing positive for you, but I allow those moments to happen (for a short time) and then I give myself a kick in the behind and tell myself to get over it, time to fight.<br />
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Why am I currently in this revolving door you ask? Well Parkinsons I can deal with, I work out, hard 5/6 times a week, as said a million times before exercise is the only proven way to slow the progression of PD. And through my workouts I keep PD in check, it can be tough but I can manage it. Dystonia however is kicking my ass. Nothing seems to slow it down, it's painful, it's frustrating, it can be debilitating by times. I was woken yesterday abruptly by a severe Dystonia spasm in my left calve muscle. It's only happened 3 other times so far this year and it is horrific. 4:30 am and it hit, the muscle is already twisted up and deformed 90% of the time but when these spasms hit it's like something you've never seen or felt before. It's difficult to put to words but I grabbed the blankets shoved them in my mouth and bit hard in an attempt to not scream in pain at the top of my lungs and wake and scare my 6 & 9 year old girls. It's like the worst charlie horse you've ever gotten times a million that lasts for sometimes days. The initial spasm lasted about 3-4 minutes which feels like an eternity in the moment, you can see the muscle protruding out of my leg like a tennis ball trying to find a way out. The pain is so intense all you can do is writhe around, yet try not to move to make it worse and wait it out to settle. But even when it settles it's not over, the spasms although much milder will continue on for sometimes 2-3 days after. When it settled I got out of bed, unable to put my foot flat as the muscle in my calve wouldn't allow my foot to flatten to the floor, yet flexing your toes aggravates it. Tears flowed down my cheeks as I slowly, painfully made my way to the kitchen. I have to admit when I sat down I cried the ugly cry, part from the pain and part that this is just not fair, why me? Tears of how sometimes it feels like this 40 year old body I live in that's really more like a 97 year olds is just mean and cruel and unfair. Sometimes it's all just hard to accept and a moment like that I think it's warranted to feel that way.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZmmdNr7tet9Eo2NwhetdtEy9MwNek8lM7vp2jWiVqyVezyz652Imxm3lVAzcc5FJBtw1AqKs5I0SPrEOnRIRNg14YoS8I2v_o1TcO_FwDt_WTyZvKYKlaDMxIUzW5459JxGH6hmDgCxhZ/s1600/life+stronger.PNG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="209" data-original-width="221" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZmmdNr7tet9Eo2NwhetdtEy9MwNek8lM7vp2jWiVqyVezyz652Imxm3lVAzcc5FJBtw1AqKs5I0SPrEOnRIRNg14YoS8I2v_o1TcO_FwDt_WTyZvKYKlaDMxIUzW5459JxGH6hmDgCxhZ/s1600/life+stronger.PNG" /></a>A little over a week ago I traveled to New Brunswick to my Movement Disorder Neurologist and I got botox injections for treatment of Dystonia. It's something I swore I'd never do (never say never) but the pain was getting too hard to bare. I have Dystonia in both my calves and my forearms and hands. I can deal with alot, I've had alot of loss since being diagnosed with PD and I can handle that and have worked to deal with it. However it hit a point where the pain to walk sometimes especially first thing in the morning and as doses of meds wear off is intolerable. Even that I could deal with, I use the cane when needed, I sucked it up and got the wheelchair placard for my truck despite it bothering me to do so, but music is my happy place, my therapy. My garage which we call "Corner Jam" is my music therapy room. When I'm out there I don't think about Parkinsons or Dystonia, I don't worry about what the future holds, I don't stress about the pain, I just get lost in playing an instrument and I feel happy. Playing my fiddle was becoming impossible just holding it was painful and recently I only had about 5 mins in me to play and playing guitar was becoming painful too. For me giving this up is not an option and certainly not something I'm willing to accept without a fight. So I went for botox injections, 16 in total, 4 in each calve muscle and 4 in each forearm. I'm blessed to have some pretty great friends and with my husband being away from work my friend Gail came with me for the 700km return trip. She held my hand while the extremely painful injections went into my twisted up, tight, cement like muscles as I let out a scream and tears flowed from my eyes instantly like someone turned a faucet on. Thankfully although painful it was very quick. I left there with news that its not only stiffness in my hips from PD causing pain but likely arthritis developing in my hips from my limp and imbalanced walk when meds aren't working (really? I got a lemon for a body), and updated prescription for my meds another levodopa added daily because I'm awake too many hours of the day and have too much wearing off time increasing my daily med number to 27 pills a day taken at 9 different times starting at 5am right up until shortly after midnight. I was told the botox would take a week to work and a month to peak, he didn't seem confident it would work for my pain in my foot or that I'd play fiddle pain free, simply said 'maybe' which was disheartening as that was the two main reasons to get it. I'm still hopeful however despite not seeing any improvement in my foot pain I have been able to play the fiddle for about 15 minute intervals without pain which from 2 weeks ago is huge.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHrlNzWwfEngRBEL2oEanXoJCuQ2pHAkbMx3ecg2XjVSdNM3dzMdbROjYrCGrw6H9Xlkru2ej0yVLQw4PID_VPuNBWqizDMNcXVtwar-KmbjZeDcKIlfe4tztbdyLKQCrUZAcn2-y-sfx9/s1600/images.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="256" data-original-width="197" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHrlNzWwfEngRBEL2oEanXoJCuQ2pHAkbMx3ecg2XjVSdNM3dzMdbROjYrCGrw6H9Xlkru2ej0yVLQw4PID_VPuNBWqizDMNcXVtwar-KmbjZeDcKIlfe4tztbdyLKQCrUZAcn2-y-sfx9/s1600/images.png" /></a>I have a friend who's life motto or the thing he always says is "expect the worst, hope for the best". I often tease him that it's a very pessimistic view on life. However I sorta get it, a way to prepare but yet be hopeful I think is where he's going with when he says that. And although life is full of frustrations it seems lately I am hopeful that botox will work, I'm hopeful that I'll soon see the neuro surgeon in hopes of getting DBS (Deep Brain Stimulation) done which will treat both Parkinsons and Dystonia. I'm hopeful that the challenges I've been faced with the last three months. So I shall dust myself off, keep hitting the gym where lifting weights, putting on my boxing gloves and throwing punches and pushing myself to do things that are hard life me up and remind me I am not weak I am strong. I will take the lemons life gave me, grab some salt and tequila and make the best of it. I will fight on and keep battling through whatever challenges come my way because although I have moments I feel otherwise Parkinsons and Dystonia DO NOT have me, I will not let them win. I will keep using my motto to "Never Say Can't, Instead say I'll Try".<br />
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My place where I get out my frustrations</div>
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and my 'Happy" Place!</div>
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AND... My world... My little family!</div>
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Previous post on Neurological Music Therapy:<br />
<a href="http://natashachronicles.blogspot.ca/2017/05/neurological-music-therapy-how-it-can.html">Neurological Music Therapy & How it can help PD</a><br />
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Previous exercise related posts & their benefits to PD:<br />
<a href="http://natashachronicles.blogspot.ca/2015/01/fear-based-motivation.html">Fear based motivation</a><br />
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<a href="http://natashachronicles.blogspot.ca/2016/05/its-hard-to-beat-person-that-never.html">It's hard to beat people that never give up</a><br />
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Visit my YouTube Channel for Workout ideas, info about Parkinsons Disease etc...<br />
<a href="https://www.youtube.com/channel/UC1j96wgdc_JiNIrMgeTZjIA/playlists?view_as=subscriber" target="_blank">Natasha 'Parkie' McCarthy's YouTube Page</a><br />
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Several weeks I attempted to do this and couldn't, I didn't have the upper body strength and I let my mind tell me I can't... but I kept trying because I won't let Parkinson's tell me I "Can't" instead "I'll try" and sometimes that means, trying and trying and trying again... </div>
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<br />A Broken Body's Journeyhttp://www.blogger.com/profile/15391303465189571744noreply@blogger.com0tag:blogger.com,1999:blog-5650477214399916268.post-69452238969333546712017-11-22T19:48:00.001-04:002017-11-22T20:04:51.211-04:00"Good news, I fed my Anger monkey a banana this morning..."<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi32hYLKUkBS-v0JvPIRYg6lVeZrmtVlJ_xSepG7OIkoWTKXr6sAb1jfPgJ6HlQsM-V0s_XbbAPiMhYKE6nJFnyYL0MbpbD-gLUxwMInvOwXu0eK0MHDmgXcQRx0msowwYABBR_CesndYBB/s1600/angry1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="481" data-original-width="657" height="234" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi32hYLKUkBS-v0JvPIRYg6lVeZrmtVlJ_xSepG7OIkoWTKXr6sAb1jfPgJ6HlQsM-V0s_XbbAPiMhYKE6nJFnyYL0MbpbD-gLUxwMInvOwXu0eK0MHDmgXcQRx0msowwYABBR_CesndYBB/s320/angry1.jpg" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinjrDjCz4EqSCsoHZCIlVa0G0rgB4qyAcP_4DKU1yoHIsDVT_aJqFW-iT2NA-g_RxWeA_i6lf6bwfncIE5Q_t6_l_axf-eaRv_CA8HPD41yA7UPYSIUQUoM_RfckbyrBiTXjDAf-520Nfb/s1600/angry3.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="809" data-original-width="540" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinjrDjCz4EqSCsoHZCIlVa0G0rgB4qyAcP_4DKU1yoHIsDVT_aJqFW-iT2NA-g_RxWeA_i6lf6bwfncIE5Q_t6_l_axf-eaRv_CA8HPD41yA7UPYSIUQUoM_RfckbyrBiTXjDAf-520Nfb/s400/angry3.jpg" width="266" /></a>Today's one of those days where I'm angry. It happens, I'm typically a glass half full kinda gal and I work hard to give myself purpose, focus on the positives & find the joy in each day and 99% of the time that's where I'm at. However we all have our days and sometimes this whole life at 40 living with Parkinsons Disease and Dystonia thing can get to you. I have three loves outside of my kids and husband of course. Horses, playing music and wine... oh and shoes I guess that makes four! Well today I had to cancel my weekly horse back riding lesson (I ride once a week, it works on balance, leg strength and posture and is by far one of my best therapies. Plus horses are good for the soul!). The Dystonia in my calves was too bad today to even think about getting my riding boots on, or using them to push a horse. So I had time to spare so I grabbed my fiddle as Wednesday is lesson day (Music therapy is great for PD) only to be reminded the Dystonia has gotten so bad that just 4/5 minutes of play and the pain in my forearms is so bad I just can't keep playing and if I do I don't play well because I can't concentrate as each additional minute is more and more excruciating. And that's when the anger kicked in, where my mind traveled to the "why me?" place, the "I am sick and tired of busting my ass to take care of myself only to keep having to give up things I love" place. And then the flip flopping started, from angry to crying and back to angry again. So what was the best thing to do, hit up natures antidepressant, kick into high gear with some anger management... you betcha, hit the gym. Nothing gets ones frustrations out like punching a heavy bag, or lifting some weights, or challenging yourself to do one more of something, or lift extra weight, or accomplish something you couldn't before. Anger can be very motivating as can fear. Today's anger resulted in beating my previous weight & bench pressing 125 lbs. Today's anger gave me strength and it will give me the push I need to get the hell over this moment and get back to my positive fighting self.<br />
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A portion of all that anger comes from fear obviously. I've maxed out on meds to help the Dystonia, Parkinsons is of course progressing, after-all I went from 4 pills a day 4 years ago to 26 now, in order-to 'appear' the same. However for the most part I continue to work hard to slow it's progression and live well. I work out 5/6 times a week and that is a huge help. Dystonia however appears to have a mind of it's own and is progressing much faster. I finally had to make the decision to get Botox injections for the pain. As it and DBS (Deep brain stimulation) are pretty much the only treatment options left and I'm waiting still to hear if I'm going to be seen as a candidate for surgery or not. In the meantime it's time to try botox despite my reluctance to inject a toxin into my twisted up muscles to essentially temporarily paralyze them; but I refuse to give up playing music especially. That is my escape, my therapy, my happy place and I am not ready to give that up, nor will I ever without a fight. So two days from now I will hit the road for my 700 km return trip to Saint John, NB where my Movement Disorder Neurologist is located and take the plunge on these injections that from what I hear can indeed be very effective. My hope is they work very well, that I can play fiddle and guitar again with less or no pain, that I can maybe use the can less and get these injections for a short period of time. That I'll get approved for DBS and hopefully won't need them anymore. But for now I will just focus on getting them this time and see what happens.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9-PQ87H3iEwdaiq7jxsLoC0Rw06VjHLsphsJS2dXRrRX52iWOSezMP5-tbtR51oykyKQmqGnUNcPzImbJTzsRFmR-bkH02ZOJFZHo3ZfW3ilMWj5UeqL-LHKZo2KQB3Tu0KAzBGc04uZM/s1600/213d1740cdf0f43472cb24e5b5cd0dfa.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="750" data-original-width="500" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9-PQ87H3iEwdaiq7jxsLoC0Rw06VjHLsphsJS2dXRrRX52iWOSezMP5-tbtR51oykyKQmqGnUNcPzImbJTzsRFmR-bkH02ZOJFZHo3ZfW3ilMWj5UeqL-LHKZo2KQB3Tu0KAzBGc04uZM/s320/213d1740cdf0f43472cb24e5b5cd0dfa.jpg" width="213" /></a>Now on a side note, because I require the cane often 3/4 times a day for short periods of time while meds are worn off among other reasons I had to give in and get a wheelchair parking tag for my truck. I had many people tell me I should get one, to make my life easier on the bad days. But wow did I have a hard time with that one. I really struggled with it, and the need for it. However I did get it and I have used it a couple of times.<br />
And with that being said I write this brief letter below in hopes of educating people to not make assumptions based solely on appearances.<br />
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To the woman in the parking lot at the grocery store yesterday who gave me the look of death, the eye roll, the shaking of her head in disgust as I got out of my Ford F150 Truck with a pair of cute boots with a small heel on them:<br />
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I understand your look of disapproval I once would have likely had the same reaction before I understood. You see I have Parkinsons Disease, yes I look too young to have it (thank you) but I do. PD makes me stiff and the stiffness on bad days turns into pain, especially cold days or days the temperature has been fluctuating. Sometimes I shuffle my feet unable to pick them up off the ground easily not to mention a bunch of other issues. I also have Dystonia which is another progressive neurological disease that some people with PD develop. It's when your brain fires messages to muscle groups and tells them to contract. They tense up, twist around tendons and nerves, often bulge out and it is excruciatingly painful. I have this in both my forearms/hands and both my calves. The dystonia in my calves has the muscles twisted up around the nerve on one side causing me to have no feeling on the top part of my right foot. On the left it pulls on the Achilles tendon and causes severe pain in the heel of my foot when I walk. Oddly enough if I wear heels the position it puts my foot in helps ease some of the pain. Standing still in heels however makes the tremor come out in my right leg, however I would rather deal with the tremor by moving around then to deal with the pain in my foot. The heels don't make it go away completely but offers some relief. The big truck you see me driving, well it has steps and a handle. I can step up into it, grab the handle and pull myself into the drivers seat. A car, well, on a bad day or when meds are worn off getting into it is hard, but getting out of it is damn near impossible. Because you have to get out by pulling yourself up I often would need assistance to get out of a car. So driving a car is not easy for me, so a truck or SUV makes more sense and helps me maintain my Independence.<br />
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And just a little extra food for thought. I have a couple of friends who have severe Crones Disease. There have been times they've had flare ups where you don't make it to the washroom in time. You're pulled over in the country using the ditch, or you frantically run into a store to try and make it on time. They are given their condition eligible for a tag for parking and for good reason. So when you see someone park, get out of their vehicle and run into the store, maybe just maybe they are trying to avoid soiling themselves.<br />
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Or how about my beautiful friend who passed away recently and while battling cancer there were times we met at the spa for some relaxation time. She may have been fighting cancer but she was still a woman that wanted to feel beautiful. So yes she'd do her hair and makeup and yes she was only young, but what you wouldn't have known as you watched her get out of her car in a wheelchair parking spot was that she was fighting for her life, exhausted, in pain and just getting from the car to the door would some days be all the energy she had. But none of that meant she wasn't allowed to look beautiful and her young vibrant self.<br />
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So you see, sometimes appearances can be deceiving. I get that when you are not in a situation like these you would never know the need for close up parking. But sometimes what you see isn't reality, and sometimes what you don't see is the pain, the panic, the agony. You think by an appearance a person is abusing a parking spot but yet what you don't know is that I cried hysterically after I got that tag for my windshield. I was devastated that I even needed it. I waited about 6 months too long to even get it because it felt like admitting defeat, or that I could suffer through those moments. What you don't see just by watching me get out of my big truck because you're too busy forming an opinion based on appearance is that it was a very difficult decision to get that tag from my doctor and part of the reason I didn't have one was not wanting the judgement like what you showed yesterday. I get it, I used to think like you, until I had an entirely new perspective and I pray you're never in a situation to have that clarity. So maybe, just maybe the next time you're in the same situation you could think outside the box. And you know what? You can ask... I'd much rather someone ask then give me the look of disgust you gave me. I'd be happy to answer any of your questions and I can assure you that most likely anyone with one of those tags would as well.<br />
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Sincerely,<br />
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The young Parkie with Dystonia... on behalf of everyone who has a wheelchair parking tag<br />
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<span style="color: blue; font-family: "georgia" , "times new roman" , serif;"><b><i>And on that note I shall pick myself up, dust off the angry, wipe away the tears and start a new day tomorrow with my fighting spirit back, my glass half full attitude in check, my determined to find the joy in each day self. I shall use all that anger from today to fuel the fight tomorrow and moving forward. Because Parkinsons and Dystonia may be what I have, but they do not have me, I am stronger than they are!</i></b></span></div>
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Here are some links of some of the things mentioned here that may be of interest:</div>
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Deep Brain Stimulation for PD & Dystonia:</div>
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<a href="http://natashachronicles.blogspot.ca/2017/05/deep-brain-stimulation-for-parkinsons.html" target="_blank">http://natashachronicles.blogspot.ca/2017/05/deep-brain-stimulation-for-parkinsons.html</a></div>
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Music Therapy:</div>
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<a href="http://natashachronicles.blogspot.ca/2017/05/neurological-music-therapy-how-it-can.html" target="_blank">http://natashachronicles.blogspot.ca/2017/05/neurological-music-therapy-how-it-can.html</a></div>
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Horseback riding:</div>
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<a href="http://natashachronicles.blogspot.ca/2015/12/think-outside-box-never-give-up.html" target="_blank">http://natashachronicles.blogspot.ca/2015/12/think-outside-box-never-give-up.html</a></div>
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Visit my Facebook Page <a href="http://www.facebook.com/BrokenBodysJourney" target="_blank">www.facebook.com/BrokenBodysJourney</a></div>
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YouTube: <a href="https://www.youtube.com/channel/UC1j96wgdc_JiNIrMgeTZjIA?view_as=subscriber" target="_blank">https://www.youtube.com/channel/UC1j96wgdc_JiNIrMgeTZjIA?view_as=subscriber</a></div>
A Broken Body's Journeyhttp://www.blogger.com/profile/15391303465189571744noreply@blogger.com1tag:blogger.com,1999:blog-5650477214399916268.post-84674246617150269532017-10-24T06:26:00.002-03:002017-10-24T06:32:30.329-03:00Admitting defeat isn't failure as long as the goal remains the same. It just means the path to get there changed.Now saying that and meaning it are two different things. We all have those moments in our life where we do something we swore we'd never do, or we worked our butt off at something only to give up before we're finished. Maybe you vowed you would do something and you never got there. However maybe just maybe there's a million reasons for those things, maybe it's a temporary 'stall', maybe the way you're doing something wasn't working so you need a break to figure out a new way.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCy-IXdnUsHkZwRjZtuTSogvrEJBa6SbkGvMS6UKQy17mUW-8tyktUvJEDJjD1UbAyRQyh_K_bzowsudBsH9LUcOqsfFfJn43NzHkTsof21bK2QtIt5SXjHc5zx2sSk4HgGVcR-Tqt2w2F/s1600/defeat+quote2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="577" data-original-width="960" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCy-IXdnUsHkZwRjZtuTSogvrEJBa6SbkGvMS6UKQy17mUW-8tyktUvJEDJjD1UbAyRQyh_K_bzowsudBsH9LUcOqsfFfJn43NzHkTsof21bK2QtIt5SXjHc5zx2sSk4HgGVcR-Tqt2w2F/s400/defeat+quote2.jpg" width="400" /></a></div>
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Lately I've had the overwhelming feeling of "defeat" looming over me. Like a dark cloud that follows me and you can't seem to get rid of it even if the sun is out. Life's been challenging the last couple months and emotionally draining. My 9 year old daughter is suffering from severe anxiety, panic attacks that have lasted up to 4 hours long and seperation anxiety. She's had times like these in the past but never as bad as now. There were days when I couldn't so much as step foot outside the house to run to the garbage can and she'd panic. And when it hits it's always around a worry about Mom and my health. It completely breaks my heart, fills me full of Mom guilt and consumes me with pain. I love that she's sweet and caring and compassionate but I hate that she's scared, worried and feels the need to play nurse to Mom. But we shall get through this as a family and things have already improved since she started (despite her best efforts to refuse) going to therapy. I know with time this will give her the tools she needs to deal with things in a more positive way.<br />
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Add to that and a dear sweet friend of mine lost her courageous battle with cancer. She was my go to when it came to things like my daughter struggling. We had countless hours of conversations about Mom guilt and parenting while living with a disease etc... Caitlin was inspiring, a fighter like no other, full of wisdom and beauty and had the most amazing spirit. I miss her terribly but I'm so grateful for the friendship I had with her. She will never be forgotten and her spirit I know will and is with us and here to guide many of us as we continue on this journey of life without her physical presence.<br />
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There's been many other bumps in the road the last couple months as well, many things to worry about, sad news, heart ache and stress. And it's funny how all these big things can come at you and you keep fighting through it, standing strong and then the small thing is what can send you over the edge into a complete meltdown. This for me was tooth pain last week. I had a cavity filled, long story short I need a root canal done this week. The pain in my tooth was horific and after multiple attempts to fix it and avoid a root canal or pulling it I lost it. Tears streaming down my face, full of frustration and upset and just ready to throw in the towel on everything. My mind was in poor me state at full throttle. All I could think of is how I fight everyday to stay positive, exercise to slow progression of Parkinson's, smile through the pain of Dystonia and focus on sheer determination that I will not let PD or Dystonia win, that I am stronger than they are... only to have pain in a tooth and what should have been a simply cavity filled take a sledge hammer to all those mindsets I try to live by. Instead of my fight "Screw you Parkinsons" positive attitude I was now in a place of why me? Why can't anything just be simple? Why is everything a challenge? Why do I have to live with excruciating pain from Dystonia when I already have Parkinsons to contend with? Why is my poor sweet daughter suffering emotionally because of me? Why is life so unfair lately? What did I do to deserve all this?<br />
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I've said before that sometimes there's power in a good cry and a huge hissy fit. There are times in life they are essential. And yes in those moments I was so angry and frustrated I was momentarily giving up, admitting defeat but like always I got up, gave myself a kick in the ass and said that's enough. Time to move on, get on with it, keep on fighting. And then the next moment of weakness hit. I started the ball rolling on something I swore I would never do, that I'd never hit the point where I would give in to this, I'd never no matter how bad things got do it... I sent an email to my Movement Disorder Neurologist's PD nurse requesting Botox injections in my calves and forearms and possibly hands for Dystonia treatment. A treatment option he's been suggesting for about 2 years. And yes it can be very effective but it's injecting a toxin into your body and with that comes side effects. But, I admitted defeat to the beast of Dystonia. Admitted that the pain is getting too intense, that I hate that it's starting to take my ability to play the fiddle and guitar away because just holding the instruments is painful and that is something I love. Admitted that I hate the fact that I'm now using my cane almost daily even if it's just for 15-20 mins while I wait for meds to kick in. Admitted that for days like that I am going to have to take my beautiful friend Caitlin's advice of getting a wheelchair tag for my truck. Admitted that I can't do alot of things I could do even a year ago. I had to admit defeat and it sucked. And then the wise words of my friend entered my mind that she had encouraged me with so many times. To just accept needing help in certain areas, get the cane for the days you need it, just bling it out and find a way to make it fun. Be open to things that will make my life easier and so on. She always had a way of putting things in perspective and changing a negative into having at least some small positive spin. So it then hit me that admitting defeat isn't failure (or giving up) as long as the goal remains the same. It just means the plan to get there changed.<br />
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And my goal is still the same, to never give up, to show my children that you can conquer anything in life that comes your way if you remain focused and determined. To do everything in my power to live well with PD. To help others who are struggling. To be grateful for my blessings and live life to the fullest. So having a meltdown over a tooth, or giving in on getting Botox injections, or investigating the options of having Deep Brain Stimulation done are not me being defeated. It's simply a new plan on how to stay true to my goals in life. If the plan isn't working change the plan but never the goal. So with that in mind I shall dust myself off and get back to my fighting spirit. I will stay focused and accept life's new challenges as they come. I will remain positive and determined like I always have been and show my children that one should never give up and that once in a while admitting defeat is not that, it's a reality and a path to a new type of victory!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDBogSCY8H9I0lkYT-lYsi7N9duuUWqf6Mn6yXNyv2uFOLiyGB2n5ZfBQ84Zcw-yfJa-2JpU_S81xq8lznom-Jlo290_QyM_eDIy9Smpp5VOfCy-vLX35PZvWUK7ng8Vjy-HQdKmfJpXi_/s1600/22773422_10159474398340501_475473535_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="248" data-original-width="390" height="203" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDBogSCY8H9I0lkYT-lYsi7N9duuUWqf6Mn6yXNyv2uFOLiyGB2n5ZfBQ84Zcw-yfJa-2JpU_S81xq8lznom-Jlo290_QyM_eDIy9Smpp5VOfCy-vLX35PZvWUK7ng8Vjy-HQdKmfJpXi_/s320/22773422_10159474398340501_475473535_n.jpg" width="320" /></a></div>
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And to my friend Caitlin, who was taken from this world far too soon.</div>
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Thank you for your friendship, advice, guidance, love and so much more.</div>
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The world is a better place because you were in it.</div>
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Rest in peace my friend...</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNsXLglTNqa06R4wtDAmut8OEvwwulhq6NdxwSpHd6soKvs8b_QlM6PnvHfMBHLU7lQNYrX0d8gUFBpHjQYIrIBNiYpKU7QXA1iDrWVMcUOPJKEKK4usmOHtvV9kKHuGgXawloC5G-r3yW/s1600/22782298_10159474409775501_1618745386_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="678" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNsXLglTNqa06R4wtDAmut8OEvwwulhq6NdxwSpHd6soKvs8b_QlM6PnvHfMBHLU7lQNYrX0d8gUFBpHjQYIrIBNiYpKU7QXA1iDrWVMcUOPJKEKK4usmOHtvV9kKHuGgXawloC5G-r3yW/s320/22782298_10159474409775501_1618745386_n.jpg" width="226" /></a></div>
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Here's a link to a song I wrote about her and how amazing she was:</div>
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<a href="https://www.facebook.com/natasha.mccarthy/videos/10159383174950501/?l=7653623334746853356">https://www.facebook.com/natasha.mccarthy/videos/10159383174950501/?l=7653623334746853356</a></div>
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<br />A Broken Body's Journeyhttp://www.blogger.com/profile/15391303465189571744noreply@blogger.com0tag:blogger.com,1999:blog-5650477214399916268.post-13565068798516893772017-09-19T11:54:00.001-03:002017-09-19T11:55:47.405-03:00Happy Anniversary Parkinsons & bring on year 4!Today marks my 3 year Anniversary with Parkinson's Disease, of course I've been living with it much longer than that, and I was told I most likely had Parkinson's in April of 2014 (8 months after things got bad and I already had to stop working) and started treatment for it then; but today marks the day that my diagnosis was made "officially official"<br />
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So as always out of curiosity I looked to see the traditional gift on a 3 year anniversary. It's leather and this is what it says about it: "The 3rd anniversary is often when a couple is aware of their durability of their relationship, that's why leather is the traditional gift." Hmmm durability? So I looked up the official definition of that which is:<br />
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noun: <b>durability</b></div>
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the ability to withstand wear, pressure, or damage.</div>
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<span class="vmod">"the reliability and durability of plastics"</span></div>
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<tr><td class="lr_dct_nyms_ttl" style="font-style: italic; padding: 0px 3px 0px 0px; vertical-align: top; white-space: nowrap;">synonyms:</td><td style="padding: 0px;">imperishability, durableness,longevity</td></tr>
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Now isn't that interesting? I guess I could use that in the sense that if one with PD continues to exercise our bodies will remain more durable for longer? It's a neuro degenerative disease so I suppose our bodies must be able to withstand wear, pressure or damage to some degree. Mentally you most definitely have to withstand those things. So not a big fan of this years "official gift" of the anniversary I looked up the non traditional gift which is crystal or glass. Now this makes me laugh cause I use plastic at home for obvious reasons. Because it really sucks when you drop your glass of wine, but it's worse when you have to clean up glass on top of it! Ha! Ha!<br />
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Alright now that the bad jokes are out of the way... As I'm in my 4th year of officially knowing it's Parkinson's I'm living with (and about 3 with Dystonia) it seems in one way like I've had this forever. I say that as I have definitely despite my best efforts of exercising (the only proven way to slow the progression) and doing various traditional and non traditional therapies (music therapy, horse back riding, etc...) it seems I cannot stop the progression. In fact I often wonder how much worse I'd be if I wasn't active. To the outside world looking in when my meds are "on" most people would still never suspect there was anything wrong with me, when they are wearing off however I am now using my cane much more than I ever anticipated so soon. I've had to get over the mental thing where I only use it at home where nobody can see me. I've had to endure the "pitty stares" in public when I limp using it at the grocery store or other public venue. I HATE the pitty stares, I would much rather you simply come right out and ask me "why is it you're using a cane" then stare at me with that "look" as I can tell your wheels are spinning wondering why such a young-ish lady is needing a cane. My dear friend Caitlin helped me get over some of those hurdles which I know in the grand scheme of things a cane is NOT a big deal compared to some people's battles. She told me time and time again if I need it use it, to bling it the hell out and go for it! So I got a blingy cane, red with jewels and a fancy top and it's even monogrammed and says "Screw you Parkinsons & Dystonia" on it! I digress, I must get back on track... Point being it can be frustrating by times when you do everything they tell you to do to slow the progression and yet you continue to get worse in what feels like a very fast way. Now at 3 prescriptions totally 24-26 pills a day (I started with one and 4 pills) in order for me to appear the same to everyone when the meds are working, but now there are sometimes I cannot hide it. That all seems too fast for 3 years. I'm proud to say I've also accomplished alot to help the Parkinson's community in that short time and when I think of all the articles and fundraising, cycling across PEI to raise awareness and fighting for legislation changes with Parkinson Canada's Ambassador network etc... I sometimes wonder how that could all have happened in 3 years. But yet at the same time it feels like just yesterday I sat in that room and was told this was my new life. <br />
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I had someone send me a message the other day telling me that my upbeat attitude helped them during a tough time recently and they admired my ability to keep perspective in check. Well I don't think admiration is necessary or warranted but my response was simply that some days are easier than others to be positive but that I tried the 'down in the dumps' thing and it just doesn't help. And it doesn't, it makes it worse. Sometimes a good pitty party is required and that's fine throw a fit, I do but don't let it last too long. Dust yourself off and get up and be grateful. Yes grateful, no matter what your struggle because there's always someone else out there with a load much heavier than yours. Not that this diminishes your situation or struggles in any way it's simply a matter of perspective. I've said all alone since my "D" day that Parkinsons picked the wrong chick to mess with and to "bring it on"! Now I admit it could bring it on a tad slower than it does and there was no need to give me Dystonia too, but that's just life. You have to find a way to take what's thrown at you and find or do something positive with it. Because if you don't you're going to have one long miserable life. After all Parkinson's and I may be starting our 4th year together but that's 3 down and forever to go. Would you rather dust yourself off and fight to live well with PD by your side, or lay down and let it crush you? To me there is no option in those two choices, fighting is the only one.<br />
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As I wait to hear word after doing a control test to see if the Neuro surgery team in Halifax will take me as a candidate for Deep Brain Stimulation (DBS) I'm reminded of my former eye rolls and feeling of annoyance every time my med alarm goes off on my phone, 9/10 times a day. However after a bout with the flu in the spring and then doing the DBS control test I've found a new level of gratitude for that med alarm and the pills I put down the hatch. When you get a glimpse into what your life would be like without them you quickly change your perspective to one of gratitude. Thank God for those pills so I don't have to live in such agony everyday.<br />
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The long and short of it all is that Parkinson's and obviously Dystonia and I are a threesome that are going to be together for a very very long time. I can try and shove them in the closet but they are always going to come back out and the energy required to have them in there is far too great. So I make the choice to embrace them and try and coincide as best I can. I am my own health advocate, you should be too because nobody knows your body better than you. Experiment with therapies, think outside the box, be open to new things and research, research, research. Because you need to be an expert to live well. A local support group is the best way to start accomplishing this. But most of all keep on going, don't give up.<br />
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So, as today marks a milestone I say you to Parkinson's... Happy 3rd Anniversary and here's to many more years together where I will fight you tooth and nail with all I have, so keep bringing it on cause you still chose the wrong chick to mess with. I will fight for myself, for my two beautiful girls, for my husband and I will educate and raise awareness to help fight for others...<br />
I won't be defeated that easily....<br />
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Visit my FB Page: <a href="http://www.facebook.com/BrokenBodysJourney" target="_blank">A Broken Body's Journey</a><br />
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A Broken Body's Journeyhttp://www.blogger.com/profile/15391303465189571744noreply@blogger.com0tag:blogger.com,1999:blog-5650477214399916268.post-29795353608276065332017-06-14T17:01:00.000-03:002017-06-14T17:01:22.405-03:00Dig deep & show Parkinson's who's boss!Last week I set out on a journey of a lifetime with two Parkie friends and together we achieved something I never expected I would in my wildest dreams without having Parkinson's let alone with. Myself, Dan Steele & Paul Bernard cycled Prince Edward Island's Confederation trail from tip to tip totaling 273 km in 5 days to raise awareness and funds for Parkinson's! <br />
We called ourselves the <b><i><span style="color: blue;">PEI Pedalling Parkies!</span></i></b><br />
We spent over 20 hours in the saddle, we biked through extreme heat, wind & rain. There were times I honestly did not think I could go on and oddly enough every time that happened I saw a butterfly right in front of me, leading the way. I've written about butterflies before and their significance to me. They symbolize a catalytic moment in life and when a butterfly breaks open it's cocoon to take flight, the harder it's struggle is to get free the stronger it will be in flight and the longer it will live. I do not believe in coincidences and in the moments I thought I couldn't peddle one more turn there was a reason a bright yellow butterfly would appear just ahead of my tire, fluttering forward. A reminder to keep going!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7WS2W__yhzn1s8WfJr64__YI0AXIFBW9sLs6BEOsxtTDqC8leAYeLfjygdIXFZ9epJ9fEHmrZpZ9PNDObuLjLnBs9W24MWxPLV-918bho341v6gXgcxExvR51jTOUJ9ES6fX9h0qZ3Ieu/s1600/18951364_10158812671060501_7856369528894768288_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="960" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7WS2W__yhzn1s8WfJr64__YI0AXIFBW9sLs6BEOsxtTDqC8leAYeLfjygdIXFZ9epJ9fEHmrZpZ9PNDObuLjLnBs9W24MWxPLV-918bho341v6gXgcxExvR51jTOUJ9ES6fX9h0qZ3Ieu/s320/18951364_10158812671060501_7856369528894768288_n.jpg" width="320" /></a>It all came about in a rather funny story. My friend Dan used to be a hardcore cyclist, completing the province wide cycling trip over a dozen times in the past, even doing it once in a day (which I cannot even imagine). He cycled Cape Breton's infamous Cabot Trail multiple times, cycling through mountains and he event spent 7 weeks cycling across CANADA from British Columbia to PEI. And then like many of us Parkinson's Disease took over, fatigue, tremors, slowness, depression, apathy all the typical symptoms most of us Parkies have to deal with consumed life. Dan was diagnosed about 3/4 years prior to me and will turn 50 this year. I met him after my own diagnosis when I started attending the local Parkinson support group. Over the last 3 years I've as Dan calls it 'badgered' him to get active again, after all like I've said so many times it is the only scientifically proven way to slow progression. I would ask him to go for a walk, come to the gym with me, give bootcamp a try or to go biking with me. He always said no, but always seemed grateful I would continue to ask (and likely a bit annoyed I wouldn't stop LOL. Late last year Dan was in the process of finishing working and going on Long Term disability. Something I had already done and as I've written before struggled with. It's a hard thing to give up a career you both loved and worked hard for all your life at such a young age. I still struggle with it by times and it'll be 4 years this summer since I had to stop working. Knowing how difficult it was for me I tried to help with a positive spin on it for Dan. Telling him how there are benefits to not working, like having more energy to be a parent when you aren't exhausted from trying to pull off a days work, being able to take better care of yourself and of course having more energy to exercise and the ability to time meds being at their prime. All very true but even I still struggle believing them sometimes. <br />
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<b>Pre Trip Interview with CBC Radio's Island Morning Show</b><br />
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So this is when it happened... I opened my big mouth and Dan called my bluff. I said to him "hell once you're done working you can cycle across Canada again!" to which he gave me a look, laughed and said something to the effect that he'd done little to no exercise the past 6 years and he didn't think that was going to happen. So I continue on with "OK, then, PEI, you can bike across the province again, hell if you do it, I'll do it with you!" Never did the thought cross my mind that after 3 years of hounding him and three years of no's to everything from a walk to a leisurely bike ride did I think this man would say YES to this insane idea. Well, he did just that and I laughed thinking he was joking only to have him the following week start discussing planning the trip with me. Oh dear... what did I just do? Is the only thing that came to mind. I was encouraging him and panicking inside all at the same time in the weeks to follow. To speed things along I knew when January hit this year that despite my fears about cycling 273 in 5 days with a Parkie body and one that was never a cyclist before was worth the effort when he hit the gym and put his bike on a trainer in his home and started faithfully working out. And then the tables changed ever so quickly. I couldn't get myself motivated to get on my bike after a friend lent me a trainer for it. It sat where I would see it, set up and ready to ride on it mocking me from a distance, I had zero interest in getting on that thing, even though I knew I had to. So when I would see Dan typically at least once a week the questions on 'did you exercise this week' became his vocabulary not mine. He was the one hounding me about training for the trip and I was the one saying that I hadn't done it. In the words of Dan "be careful what you wish for"!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVJCDwhak8KEj_j-sUiWg5AZTclzPQRW2tzt1VYLZ3jPF_h2g89LBH8S0uOiJcIRNZjOlLTfs1ARKCcE2mrss5c4rTf05SqzWOS5KnXFqL7RGeMvFDb-5iYgyKLIlrtojFuCOyeI7Ed-Y_/s1600/1+no+pd.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1600" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVJCDwhak8KEj_j-sUiWg5AZTclzPQRW2tzt1VYLZ3jPF_h2g89LBH8S0uOiJcIRNZjOlLTfs1ARKCcE2mrss5c4rTf05SqzWOS5KnXFqL7RGeMvFDb-5iYgyKLIlrtojFuCOyeI7Ed-Y_/s200/1+no+pd.jpg" width="200" /></a>All that being said we put it out there that this was something we were going to do. We decided it was a prime opportunity to spread awareness about the disease we both live with and how it's not necessarily that image of the old hunched over man. That young people get the disease as well, and even the seniors that get it don't often appear that way, especially not if their medications work properly. It was an opportunity to dig deep and push the Parkie limits and show not only the disease who's boss but others that they shouldn't give up. And it was a great opportunity to raise money so we can offer more programs, services and things to help people in our province that live with Parkinson's. So we put it out there for others to join and another Parkie friend of ours Paul was the first to sign up, followed by 4 other people who wanted to join us and help support the 'three parkies' on this trip. We had various others register to ride a day or two and tons of volunteers and donors to help make it all happen. We hit some training days together as a group and individually leading up to our June 6th departure and we were as ready as we were going to be.<br />
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What I did not know when this all started, was just how difficult it was going to be. Of course I knew it was going to be hard as hell, but I didn't count on how difficult emotionally the trip would be. I had no idea how much I'd laugh even through tears and pain spending 5 days with this two incredible men and the support riders, getting to know each other on much deeper levels. I had no idea just how inspiring they and the experience would be. I had no idea that this insane idea that I never thought he'd say yes to could be life changing, I think for all of us. I had no idea. None whatsoever. And when the day came to head to Tignish on the western tip of the province to start pedalling to the eastern tip I had no idea I was about to embark on one of the hardest but greatest experiences of my life, I couldn't have known as we piled in those vehicles bikes loaded that this trip was going to change lives, particularly my own. That it would inspire so many people to not give up, to never let anyone, or anything including a disease tell you that you can't...<br />
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We did five days, the first was relatively easy (I say that with a giggle) from Tignish to O'Leary was 45km and the weather was great for cycling, the trail was relatively easy on that stretch and we finished day one much easier than I thought. We had a great time that evening at the Mill River Experience where the resort donated rooms to us, had a beautiful meal together, a bit of vino to celebrate and we gathered in a room, played some guitar and sang. It was awesome. <br />
Day two we cycled 64km to Summerside, the morning went well it was getting hot but there was a nice breeze and then afternoon hit. My own personal hell at over 30 degrees with too many uphill battles for my liking. This marked the first time I pedalled and cried at the same time as the thought went through my head that I was going to die on that trail! But I didn't, and with the help of our team and even a friend on speaker phone for the last 3km distracting me with conversations about anything OTHER than riding a bike I made it, we all did! That night was more guitar playing, more food and drink and laughs from our bellies like never before. Oh the laughs, it was good for the soul! <br />
Day 3 was from Summerside to Hunter River and 46km. A tough ride with alot of hills, hot and hard, thank heavens there was a long big downhill stretch near the end. That night we were hosted by a beautiful woman, Sheila at her cottage where she cooked a feast for us, and opened her home for some of us to stay. <br />
Day 4, we were thrilled to have my dear friends and fellow Parkies Cari & Peter join us for the final two days of our trip from Nova Scotia. I adore these two people and was so glad they came! We traveled to Morell that day another 64km day. The forecast was bad, heavy rain and wind suppose to hit in the afternoon. So we tried to gear up to leave a bit early, but not before we got some cheers and high fives from an amazing group of grade 1 kids from a nearby school! They met us on the trail, checked out our bikes, asked us questions and then formed a line to cheer "go team go" and give high fives as we cycled by them to start our day. It was a heartwarming sight and I struggled to hold back the tears. We made it to Tracadie before the rain hit, and it remained relatively light until Mount Stewart our stopping point for lunch. By then the rain was hard, the wind was sideways, we were already wet and cold and the idea was tossed around to end for the day and add that 15km to the following and final day and start early. The thoughts of making the last day longer and not sticking to the plan despite the lake in my sneakers and the stiffness in every joint from the rain and cold were not flying with me. I said to the group it was a great idea and go for it if anyone wanted to but I was cycling to Morell that day, Dan then stood up and said with a huge smile "I knew you were going to say that and I'm right behind you"! And with that we were off. It was a wet, cold and very hard trek to our destination that day. 15km seemed like a 100 as we tried to pedal through the wet trail, even flat or downhill portions were hard to pedal on and were extremely draggy. By the time we arrived in Morell my stiff Parkie body needed to be peeled off my bike as I couldn't get off on my own by some great helpers and a shower that night was the best thing I'd ever experienced! We were lucky to have yet another hostess with the most-est Isabel cook us a feast and offer up her home for us! <br />
Day 5, the last day, the final 54km of our trip to Elmira the eastern tip of the Island. The weather was perfect, sunny and hot but a perfect breeze. The scenery especially the first part was spectacular and by far the prettiest we'd seen on our adventure so far. And the hills were never ending, and I mean never ending and the tears flowed multiple times that day as I thought there was no way to go on. But yet again that butterfly appeared guiding me. We pushed through and not one person gave up and the finish line was so close after our final stop 15km shy of the end for lunch we could taste it. (maybe that was just the delicious food Maxine provided for us. We were so spoiled, Jean gave us a lunch feast fit for a king the day before and Florence & Maureen the day prior to that!).<br />
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<b>Day 5, departing Morell and arriving in Elmira, the final 54 km's</b></div>
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We had as I mentioned 7 people that cycled (our Parkie three & 4 support cyclists) the entire 5 days from tip to tip. But we had many others join us for a day or two along the way. Shown here is the "Parkie five", myself, Paul, Dan and Cari & Peter who joined is the last two days! During the course of the week we had a total of 20 people join us throughout the week, five of which had Parkinson's, it was incredible! Our final day we crossed the finish line with 15 cyclists and we had a 16th for the first portion of the day! Never did we expect to have so many join us it was wonderful! As we approached the final 2 km of the day with Dan, Paul & myself leading the pack followed by our friends Cari & Peter and then the rest of the support riders we met my amazingly supportive husband and my dear friend Gail who rain 2.5km up the trail to meet us and ran with us to the finish line. My husband I know worried about me all week, when I told him we were doing this trip I could see the worry on his face, but like always he's my biggest supporter and cheerleader and I am so incredibly blessed to have him and so many other amazing people always rooting for me in my corner. We pedalled on and you could start to hear the cheering crowd at the finish, a crowd that blew our minds and overwhelmed us. This trip all came about because of Dan and I wanted him to take the lead and cross the finish first, but in the end our friend Paul was the one who earned the honor. Paul is more progressed than Dan and I and I'd be lying if I didn't admit we were worried about his ability to complete the 273km trip and even encouraged him to take breaks each day and drive with our amazing support vehicle driver Denis who made the trip possible. But Paul wouldn't hear of it, he was riding and made that well known. Paul dug deeper than anyone did, he inspired every single person that cycled over that five day period. He taught all of us that if you put your mind to something it doesn't matter whether the obstacle is Parkinson's or something else you can achieve greatness, you CAN do anything! He finished most days at the front of the pack, he put his heart and his soul into this trip, surprised us all and he is my hero! Words just can't accurately explain how proud I (we all) are of him, words can't express how grateful I am for his spirit and teaching us that nothing is going to stand in his way, teaching us that when faced with adversity you can give up or you can fight on and if you choose the latter you will succeed. He was a rockstar on this trip and nobody deserved or earned finishing first more than he did. Tears streamed down my face as he got faster and faster as the cheers from our supporters at the finish got louder and they still flow as I talk of it or watch the video's of our finish. To Paul, I say thank you from the bottom of my heart for the privilege of cycling with you this week, for the privilege of being your friend and for all you taught us this week! I am in awe of you!<br />
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The finish line was a blur to some degree, so very surreal, so incredibly overwhelming and emotional. With each hug I held back tears or they flowed without any control. And as I looked over at Dan, the reason for all this and I reflected on a week of seeing the most giant smile on his face and hearing him laugh harder than I'd ever heard before I knew right then that this week changed all of our lives. There was a spark in Dan's eyes I'd never seen before, he talked about future cycling trips and reminisced about previous ones. He was on fire inside and out and I can't help but be brought to tears at what this insane idea that terrified the hell out of me did for all three of us and I think everyone else that participated throughout the week. One crazy idea brought an entire group together in a bonding experience that I cannot even explain, taught us all things that I don't even know how to properly put to words, showed people that Parkinson's does not need to look like that cartoon image, but rather can be an imagine of strength and courage and determination. It was all so much more than what I could have ever imagined... I had NO idea.... and I'm so grateful at all of his amazing surprises. <br />
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<b>Post ride & a rather emotional recap of the trip with CBC Radio's Island Morning Show</b></div>
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<b><i><span style="color: blue; font-size: large;">Do not ever give up, dig deep & show Parkinson's</span></i></b></div>
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<b><i><span style="color: blue; font-size: large;">or whatever your struggle is who's boss!</span></i></b></div>
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<b><i><span style="color: blue; font-size: large;">You may just exceed all your expectations, crush all your fears</span></i></b></div>
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<b><i><span style="color: blue; font-size: large;">& have a journey of a lifetime!</span></i></b></div>
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<b><i><span style="color: blue; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">The 7 of us who completed all 5 days,</span></i></b></div>
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<b><i><span style="color: blue; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">all 273km, all 20+ hours in the saddle cycling Tip to Tip!</span></i></b></div>
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<b><i><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Standing - Loretta AKA 'Crash' (Dan's wife), Myself, Paul (my hero), Shawn</span></i></b></div>
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<b><i><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Kneeling - Gaylene (who rode in honor of her Dad who had Parkinsons),</span></i></b></div>
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<b><i><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Dan the reason for this crazy ride & Roberta!</span></i></b></div>
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<b><i><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Local Reporter speaking to us after we crossed the finish line!</span></i></b><br />
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<b>Oh, and I should mention we raised $6700 for programs & services for Islanders living with PD! If you'd still like to donate you can do so at:</b></div>
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<b><a href="http://donate.parkinson.ca/goto/PEIPedallingParkies">donate.parkinson.ca/goto/PEIPedallingParkies</a></b></div>
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<b>Here are some links to some other media coverage we had:</b></div>
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<a href="http://www.journalpioneer.com/news/local/2017/6/6/p-e-i--pedalling-parkies-ride-is-underway.html">http://www.journalpioneer.com/news/local/2017/6/6/p-e-i--pedalling-parkies-ride-is-underway.html</a></div>
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<a href="http://www.peicanada.com/west_prince_graphic/article_2cc13000-4ae5-11e7-b768-63ddfc635069.html">http://www.peicanada.com/west_prince_graphic/article_2cc13000-4ae5-11e7-b768-63ddfc635069.html</a></div>
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<a href="http://www.cbc.ca/beta/news/canada/prince-edward-island/pei-parkinsons-bicycle-fundraiser-1.4142812">http://www.cbc.ca/beta/news/canada/prince-edward-island/pei-parkinsons-bicycle-fundraiser-1.4142812</a></div>
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<a href="http://www.cbc.ca/beta/news/canada/prince-edward-island/pei-parkinsons-bike-ride-1.4156222">http://www.cbc.ca/beta/news/canada/prince-edward-island/pei-parkinsons-bike-ride-1.4156222</a><br />
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<a href="http://www.peicanada.com/eastern_graphic/article_74c94298-5058-11e7-8053-877cde68eed5.html">http://www.peicanada.com/eastern_graphic/article_74c94298-5058-11e7-8053-877cde68eed5.html</a><br />
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<a href="http://www.peicanada.com/eastern_graphic/article_1f21f9c8-506e-11e7-9341-13ac746053e3.html">http://www.peicanada.com/eastern_graphic/article_1f21f9c8-506e-11e7-9341-13ac746053e3.html</a></div>
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<b><span style="color: blue; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">You can see lots of pictures and video of our trip on facebook at: </span></b></div>
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<b><span style="color: blue; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><a href="http://donate.parkinson.ca/goto/PEIPedallingParkies" target="_blank">donate.parkinson.ca/goto/PEIPedallingParkies</a></span></b></div>
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A Broken Body's Journeyhttp://www.blogger.com/profile/15391303465189571744noreply@blogger.com0tag:blogger.com,1999:blog-5650477214399916268.post-64814457996964396372017-05-24T21:26:00.000-03:002017-05-24T21:26:53.166-03:00Deep Brain Stimulation for Parkinson's & DystoniaThree years ago yesterday (after a year and a half of tests, doctors visits & alot of tears) I walked out of my Movement Disorder Neurologists office in Saint John, NB with a prescription in hand for Levodopa/Carbidopa the gold standard treatment for the past 50 years for PD.<br />
Three years ago today I was confused, a little scared but yet relieved to finally be getting answers and torn as to if I wanted the meds to work in turn confirming my diagnosis of Young Onset Parkinson's or not wanting it to.<br />
Three years ago today I picked up the RX & swallowed my first pill of thousands to come and started on the journey of treating YOPD.<br />
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Alot has happened in that three years, I was "officially" diagnosed a few months after treatment started, I came to the realization that returning to work was not going to be part of my future which caused me to have a loss of identity, I threw a few really good pitty parties, I met some amazing people that I now call friends and that are like family to me. People I never would have had to the pleasure of knowing had it not been for this fork in the journey. I somehow became a writer of sorts, connecting me with the world for advice and support. I organized events for fellow Parkies in PEI to try and get them thinking outside the box and trying new things like horseback riding, boxing etc... I attended the most amazing health conference you can even imagine, the World Parkinson Congress, in Portland Oregon last fall. The only conference like it where patients, doctors, scientists health professionals and more all together for a common cause. I cannot wait to attend the next in Kyoto, Japan in June of 2019! So much has happened in just 3 years.<br />
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And then there's the progression, the often slap in the face to ones positivity, to ones attempt to hit the gym and workout (the only proven way to slow the progression of PD), to ones focus, to ones mind, body & soul. My motto has been Screw You Parkinsons and later Dystonia was added to the end of that line as I've developed it as well. I knew I was progressing, particularly in the last year and despite all my efforts to fight, however in reality I had no idea to what degree. I have been steadily adding new and increasing medications for three years now. As the Dystonia got bad, Pramipexole was added to try and help with that and to lesson the crash from "on" to "off" from levodopa. As mornings became increasingly difficult to get moving double doses of controlled release got added. The time between doses increased with time and so on. I had often wondered when talking with other Parkies who are older than I and have been dealing with the disease often for much longer how it is that I was on so many more meds then them and yet I seemed to be in much better shape, and able to workout at boocamp and do alot of things they couldn't. And then the last weekend in April this year hit and I was given a rude awakening a glimpse 3 years later in what life would be like without my many pills a day (24 currently, 2 prescriptions, 3 types). I got the stomach flu my children had despite all my attempts to disinfect and not get it. I knew the thoughts of not being able to keep meds down were scary but I really had no clue as to how much. I started vomiting on a Friday evening, through the night and into the following morning. I could not keep anything down let alone my medication. I missed a total of 7 pills, a dose of levodopa, a dose of pramipexole and my bedtime controlled release levodopa over the course of 12 hours. By time time 7am rolled around & I finally could stomach taking a pill I manged to roll myself close enough to the edge of the bed to reach the pills off my nightstand and take one. I was so stiff, in an incredible amount of pain from it and all I could do was lay there praying it would kick in soon while tears streamed down my cheeks. About 45 mins later I thought I might be able to get to my feet, for the first time I needed the cane I had bought to keep by my bed that I hoped I'd never use. It felt like a painful eternity to get standing and the hallway from my bedroom to the kitchen felt like 10 football fields long. My tremors were extremely bad, something I don't usually have a huge issue with, my feet were glued to the floor, my body hunched over and it was all I could do to not just keep crying. <br />
I posted a video that morning of my feet trying to maneuver on a Broken Bodys Journey's facebook page you can see it at this link: <a href="https://www.facebook.com/BrokenBodysJourney/videos/1948207135401014/" target="_blank">www.facebook.com/BrokenBodysJourney/videos/1948207135401014/</a><br />
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There was definitely a lesson in that painful morning along with the slap in the face I got as to what my progression had really been like. I have to some degree despite trying to remain positive resented those pills I take everyday. When the many medication alarms would go off on my phone many times during the day I'd still have that Ugh, eye roll kinda moment. Let me tell you, now that I had the glimpse into what life would be like without all those pills I never want to experience it again. I have a new found gratitude for my medication and when the alarm goes off now I am thankful I am able to take it.<br />
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So I ventured off to my bi annual 750km return trip to see my movement disorder neurologist last Monday. This time for the first time knowing I needed more meds, as opposed to being in denial or with the mindset I'd fight a med increase again. The Dystonia I have has gotten quite bad particularly in my calves and the pain it causes in the heels of my feet can be excruciating, and I knew PD was getting worse too, especially after the flu experience. This time I had video's to show him the drastic difference of me "on" versus "off". When my meds are on I can do burpee's at the gym with a bosu ball and when they aren't working I need a cane, shuffle and am in agony.<br />
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<b><i>And when I'm off, particularly in the morning this is what it looks like:</i></b></div>
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<b><i>And when I'm on this is the drastic difference:</i></b></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLB_-c7wjX5eAozBhApGqCtee92b2JocnreOKxDLuhlFCLasWcNuJSCLasWlFvwqcMkhSIyXomZFM6oRTHp3nN8p2YTrmaWcaws8nKZ4ZBy676_Pz7hQZRgMmKDMUQzpQoYwFE3FxzANah/s1600/dbs_brain.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="173" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLB_-c7wjX5eAozBhApGqCtee92b2JocnreOKxDLuhlFCLasWcNuJSCLasWlFvwqcMkhSIyXomZFM6oRTHp3nN8p2YTrmaWcaws8nKZ4ZBy676_Pz7hQZRgMmKDMUQzpQoYwFE3FxzANah/s200/dbs_brain.jpg" width="200" /></a>So after viewing the video and over an hour going over changes in old symptoms and new ones that keep appearing with the nurse we discussed yet again another medication increase. As well as trying medical marijuana in oil form to see if it might help me sleep more than my 4 hours a day and possibly with the pain from Dystonia... AND... we discussed Deep Brain Stimulation. Not only did we discuss it, he was eager to send a referral to the team in Halifax right away saying that with the information I'd given and the video's of the drastic difference in on vs off that he was confident I'm a prime candidate for the brain surgery. I always thought DBS was a great option and that I would someday get it done when it came to that, but I honestly thought I would have to fight for it, that the criteria would be so strict it would be hard to get. I was NOT expecting to have progressed fast enough in just 3 short years since starting treatment to be considering this option now. My mind wandered as we left the appointment to "why am I progressing so fast when I bust my ass to do everything the research says I should do to slow it down? Why do I have to have not one but 2 progressive neurological diseases when one should be more than enough for anyone to deal with? Why am I getting worse so fast? Is now the right time to do DBS or should I wait longer? What's going to happen in 10 years when I'm only turning 50 if in my 39th year I'm already this bad? All those questions brought me to tears, and I had a little cry as so many thoughts, questions and emotions flooded me.</div>
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So for now, I am doing a pramipexole increase and documenting any changes in the Dystonia pain, wearing off time of levodopa (as it helps level off the crashes). Once that's complete I'm going to try the canabis oil, just the CBD type (the non high stuff) for a couple weeks to see if it helps with the pain and/or increases my sleep. If there is no effect or not enough we'll then attempt a 50/50 combo of the CBD & THC oil. I'll be sure to post about this and my experience and if it helps or not. And while I'm doing all that I've been talking to many fellow Parkies alot of which I had the pleasure of meeting at the WPC about their experience with DBS. I'm grateful that my blog has created such a network of people I can reach out to for guidance and advice and support. So to all of you thank you for that. So far I've yet to find one person who's had DBS that regrets it, in fact when asked they have all said without hesitation yes, they would do it again. In fact most have said the only regret they have is they wished they had gotten in sooner. I special shout out to my friend John Alexander in Florida who took time out of his busy life to have a FaceTime call with myself and my husband where he could tell us all about his DBS procedure which he just had done recently and allowed us to ask him loads of questions. He was in no rush and I greatly appreciate it, so thank you John!</div>
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Regardless of all of this, DBS is a big decision. After all it is brain surgery, you are awake for 4-5 hours while they drill a hole in your skull and implant an electrode into a specific part in your brain. It was said by a neurosurgeon while in Portland that it is the most effective treatment for Parkinson's and the most under utilized. Combine that with the great reviews from people who've had it done and all say they'd do it gain, this is very promising. The biggest perk for me is not only will it help PD but it will help Dystonia which is a far greater concern for me right now. The second for me would be the ability to reduce medication drastically avoiding the dreaded Dyskinesia, which scares the crap out of me. The process in Atlantic Canada is about a year long from time of referral to completion of the various tests to ensure you are the right candidate to when you have surgery. So right now its a matter of me deciding not "if" I'm going to proceed with this process but rather "when". It's alot to think about and for now it's tabled until I have a conversation with my doctors nurse in about 6-8 weeks time.</div>
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<br />A Broken Body's Journeyhttp://www.blogger.com/profile/15391303465189571744noreply@blogger.com2tag:blogger.com,1999:blog-5650477214399916268.post-51607142494483965602017-05-17T06:30:00.001-03:002017-05-17T06:30:27.778-03:00Neurological Music Therapy & how it can help Parkinson's DiseaseIf you haven't heard about Neurologic Music Therapy, you need to! A simple online search will provide some pretty spectacular information and amazing video's of how it's helping countless people with Neurologic conditions and especially people with Parkinson's.<br />
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I'll start with how Music has helped me in my journey with PD. Like many of you reading this in fact likely almost all of the Parkies reading this I don't do well in the sleep department. Insomnia and sleep issues in general are a common symptom of PD. I sleep about 125 hours a month. Yes you read that correctly, a MONTH. I average 4 hours of sleep a night, and about once or twice a month I'll get lucky and I'll pull off a 5 or a 6 hour night. However, up until last fall I was only getting about 2 hours of sleep a night, sometimes 3. Functioning on 2 hours sleep is a difficult task. So I started reading a lot and hearing a lot about Music Therapy. So in the fall of last year I made a decision to give up television something I typically sat in front of in the evenings to wind down after the kids went to bed. I started playing guitar again after about a 20+ year break (I was never really that good at it back then, but enjoyed it) I started teaching myself how to play the fiddle, something I always wanted to learn and I turned the garage into a music room which I called "Corner Jam". Much to my surprise in just about a week my 2 hours of sleep started to turn into 4. I get that 4 hours sleep doesn't sound like much but in comparison to 2, that's HUGE. I wondered if it was a coincidence that going to play music in the evenings as opposed to watching TV was why I was getting more sleep, so I played with it a bit. Randomly I'll not hit the garage after the girls go to sleep but will sit on the couch to watch something. On those nights, every single time, my sleep decreases. I asked my movement disorder neurologist and his response was "it's no coincidence, music therapy is huge, keep playing instruments as long as your hands will allow you to!"<br />
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My "strings"</div>
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Now sleep aside, playing music is also a great thing for memory and cognitive function, can even help with freezing and gait and also anxiety. When I have a guitar in my hand or the fiddle, or whatever instrument I choose in the moment I get lost. All the worries of PD and life slip away and I feel happy, content and at peace. I even started to write songs, thanks to a bit of a reverse psychology push from a friend who's an amazing singer songwriter, Mr. Cam MacMaster, originally from PEI but now a US resident with his lovely wife and daughter living in Nashua, NH. He has encouraged me to write (which is very therapeutic in itself), given me great tips and advice which are much appreciated. Check out some of his music, he's awesome: <a href="https://www.youtube.com/playlist?list=FLOi4OqStxCpRNMkAwHdPfDA">https://www.youtube.com/playlist?list=FLOi4OqStxCpRNMkAwHdPfDA</a> I've also been blessed with a very talented musician as my best friend Joseph (everyone calls him Joe, but I've always called him Joseph, he teases me that I'm his second mother) and he encourages me daily to keep playing. He also has a recording studio in his house and we've had a bit of fun attempting to record some songs I've written, although I don't seem to record well, intimidating process I suppose. So I'm grateful to these two men, two friends who support me and encourage me to play.<br />
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<strong><em>I recently got the guts to share a song on A Broken Body's Journeys Facebook page. You can check that out at this link if you'd like: </em></strong><a href="https://www.facebook.com/BrokenBodysJourney/videos/1956119801276414/"><strong><em>https://www.facebook.com/BrokenBodysJourney/videos/1956119801276414/</em></strong></a></div>
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Here is a fantastic quick video that describes the benefits of playing an instrument</div>
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I've always been a believer in thinking outside the box when it comes to therapies and treating PD, sometimes the things you would never dream could help can be huge! Try everything, if it's not your thing, or it doesn't help, then move onto something else because we are all different. Find your "thing", Music & Horseback riding are two of my favorite and most beneficial treatments, what are yours?</div>
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Here in little PEI we have some great services and programs for people with PD. One of them is a Neurologic Music Therapy class every Thursday that we call "Treble Tremors"! Our Neurological Music Therapist Shonna, helps us maintain our voices & strength, something that is a common issue with the disease among other things and we have alot of fun. I'm pleased that she was willing to do a bit of writing for this post. So I will end with her words! </div>
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Hello! My name is Shona Pottinger, and I am a Certified Music Therapist (MTA) working in Charlottetown, PEI. I focus my practice techniques in Neurologic Music Therapy, which led to presenting for the Parkinson Support Group, PEI chapter – this is where I met Natasha. After this, a weekly music therapy group for people who have Parkinsons Disease was started. Read on to discover some VERY interesting information about how music has a unique way to help those with neurological conditions such as Parkinsons. <br />
Quite a bit of research has been going on in the science and neurology world since the 90’s, specifically with regards to our bodies and how they react to sound. It has been discovered that humans are actually wired to react to sound. The motor system – which Parkinsons greatly affects – and sound perception are entwined, so to speak. The basic fight or flight instinct humans have had since day 1 is proof of this. We physically react to sounds in a variety of ways, and our motor system is key. Hang on to this while we discuss another element: entrainment. <br />
Entrainment is a rhythm that our bodies cycles (walking, heart beat/pulse) can be pulled into with a regular pulse or beat. Dancing is a way our bodies entrain to the music we hear. With a steady rhythm or beat our bodies can sync up to that sound while walking. Dopamine levels are not as high as they should be with Parkinsons; this causes a break in the bodies ability to have precise motor movements and speech. By adding sound, the motor neurons increase their rate of firing, which in turn helps to bridge the break and in the end allows the motor system to engage. <br />
Putting these two items together (auditory stimulation in the form of rhythm and entrainment) helps those who are having difficulty in their gait and speech patterns. The rhythm helps to stimulate more firing of the motor neurons which in turn stimulates the motor movements by making up for the lack of dopamine in your system. When a gait pattern evaluation is done by an MTA, a metronome is used to provide a steady pulse. This is what can help with walking. If speech is becoming an issue, a regular schedule of vocal exercises and songs specifically geared towards the issues at hand can help increase volume and tonal quality. <br />
I hope you’ve found this informative as well as interesting. Feel free to contact me (musicforyou@live.com) for more information or any questions you may have. Cheers! <br />
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My music room "Corner Jam"</div>
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<a href="http://www.facebook.com/BrokenBodysJourney">www.facebook.com/BrokenBodysJourney</a></div>
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<a href="https://www.youtube.com/channel/UC1j96wgdc_JiNIrMgeTZjIA">https://www.youtube.com/channel/UC1j96wgdc_JiNIrMgeTZjIA</a></div>
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Here is another great example of what Music Therapy can do!</div>
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A Broken Body's Journeyhttp://www.blogger.com/profile/15391303465189571744noreply@blogger.com0tag:blogger.com,1999:blog-5650477214399916268.post-69543359061271612682017-04-05T06:30:00.002-03:002017-04-05T07:31:31.798-03:00If you think you're failing as a parent, then you care enough to get it right!Being a Mom is by far the most beautiful, rewarding, spectacular thing in the entire world. You grow this human being in your body, feel it's movements, do everything you can to make sure they are healthy and then 9 months later give birth. When that baby is placed in your arms you are in awe at the emotions and the love you feel for them, a love far more profound then you ever knew existed. You now have the most important, rewarding and yet hardest job in the entire world; and there's no test, no interview just you and your tiny human and your Mom's intuition... and guilt for everything you do wrong. Anyone that's a parent understands just how hard it can be, but parenting with a life altering disease affects the entire family and makes being a Mom (or Dad) that much harder.<br />
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I started having issues with my body not working properly in the summer of 2013 when I was still just 35 years old my eldest daughter was just turning 5 and my youngest girl two & a half. It was almost 10 months later I was told "I think you have Parkinson's Disease" by a neurologist and started a treatment plan of levodopa (the gold standard treatment) a medication that will only work if you aren't getting enough dopamine. Dopamine is what's responsible for smooth movements, thinking clearly, mood etc... and when brain cells that produce it die that's when symptoms of Parkinson's Disease start to show. On September 19th of 2014 a month before turning 37 my diagnosis was official. Then started the journey of figuring out how to live well with the progressive neurological disease, finding the right medication cocktail to move properly one which for myself seems to change once or twice a year due to progression. To finding balance between your exhaustion and exercising to slow progression to being the best parent you can despite the changes and the things you can and can't do. Which brings me to where I am today on the journey 3 years later.<br />
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My youngest daughter 5 year old Izabella is cute and she knows it, fearless, stubborn, funny and doesn't have a care in the world. My eldest Samantha is 8 years old, incredibly smart, perceptive, sensitive, outgoing, caring and a 'thinker'. She takes it all in, constantly watching, listening and feeling what's going on around her. It makes her a very compassionate, sweet, thoughtful little girl and it also makes her worry. Prior to my diagnosis when they couldn't figure out what was wrong (PD isn't typically on the radar for a 35 year old) there were some pretty challenging days. Days where I struggled to get out of bed and when I did walking was difficult & just didn't 'look' right. Days where my fine motor skills were virtually non existent and days of frustration when my body wouldn't cooperate. It was difficult to be a Mom and hide these things from the kids when Dad works on the opposite end of the country and it was just me. There were days I tried my damndest to hide it but failed greatly. Those were the days my sweet Sammy would cry herself to sleep worried about Mom thinking I was dying. It was heartbreaking and hits you to the core.<br />
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My sweet Sammy doesn't miss a beat and despite my best efforts to hide days where I may be a bit "off" she sees it all, more than likely anyone else. If I'm having a rough couple days she jumps in to want to be Mom's helper, if she see's me doing laundry she'll tell me to go sit down, that she'll fold it. She'll empty the dishwasher and fill it those kinds of things. Sweet right? Well yes and no. Don't get me wrong, I'm a firm believer children should have chores and learn responsibility and mine have always had age appropriate chores. However when she wants to take over these types of things because she feels I'm unwell that day it's sweet yes, but breaks my heart at the same time for the reason she's doing it. Recently I had an off week, it's rare that happens my PD is managed very well thanks to a boat load of medication I take at extremely frequent intervals (18 pills a day, 3 prescriptions and taken at 8 different times throughout my day). As my off week continued she became more helpful around the house and then about 6 days in I had a gallbladder attack and ended up having to go to the ER. This just seemed to be the icing on the cake that caused total meltdown. In the weeks following her school work started to be affected, she was being sent out of class for disruption, she couldn't focus and was regressing in her school work by a grade sometimes two levels. All things very uncharacteristic of her. At home she would either bawl hysterically or scream in total anger at me. Her behavior spiraled and she started doing things she knew were wrong and became increasingly disrespectful and rude. This is where being a parent was the toughest ever, disciplining her for things that she did that were unacceptable, but yet knowing it was my fault she was hurting and acting out. I would be a Mom and then turn around and go bawl my face off out of sight. The guilt was the heaviest in my 8.5 years of parenting that it had ever been. She wouldn't talk to me at all, where as in the past after a day or two I could usually get her talking but no such luck this time. I spoke with the guidance counselor at her school we decided on a plan to try and help her, her teacher was & is amazing trying everything she could to get her focused and back on track but it was an uphill battle. And then when she finally opened up and started to talk came the guilt overload. She finally sat with me one Friday evening after her sister went to bed, we cuddled and talked about all the things going on with her and she admitted she was scared and worried about me and then she proceeded to remind me of all the things I used to do with her like building sledding tracks in the backyard from the snowplow pile and sitting down to colour with her, and, and.... All things I no longer can do because of either Parkinson's or the Dystonia in my hands. So we discussed the fact that she is right Mom can't do those things anymore and it sucks but that instead I try and replace them with new things that I can do. Like we go to the movies, or we play music together (she's learning piano) and in the summer we go camping alot etc... all things we never used to do much of but now we do cause they are things I'm able. We talked, we laughed and we cried together.<br />
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I've always shared PD with my kids, there's no hiding it. But I've never gone to great lengths to explain the disease much beyond what was necessary. However we hit a moment where a bit further explanation was clearly required. So I explained to her that yes there are things she remembers me doing that I can no longer do because of Parkinson's. But that I do my best to replace them with new activities and that as time goes on there will be other things I'll not be able to do because PD does get worse over time. But that I promise that as that happens I will continue to find new things we can do together to have fun. She asked questions about why it gets worse, how fast it'll get worse etc... all in all one of the most difficult conversations I've ever had with her. So we talked about all the things I do when her and her sister are at school. How I go to bootcamp to exercise and I take horseback riding lessons and fiddle lessons and how I turned the garage into a music room, and the various appointments I go to for things like acupuncture. I explained to her that exercise keeps me from getting worse, that the more I do the slower that'll happen. How Music Therapy helps with my memory and it's other benefits. Essentially we discussed how all these things are what I do to take care of myself so that I stay well and can continue to be the best Mom I can be, that these things are now Mom's full time job and that I work hard everyday to do everything I can to stay well and be the best Mom I can be. We of course discussed her behavior and how if something is worrying her she needs to ask questions and talk to me not bottle it up and behave badly and many other things.<br />
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I'm thankful to say that things have been settling down in this regard. She continues to see the guidance counselor every couple weeks and no longer seems angry about that and has connected with her and is happy to tell me the days she goes. Her school work is improving and things are settling back into "normal" again but it was nearly 8 weeks of hell. I don't think I ever cried so much in my life as I did watching my poor sweet girl suffer, worry and hurt while I tried desperately to help her. For those of you parents reading this, you are not alone in your guilt or worry about your kids well being as you try to manage this new life and disease. I'd say don't be so hard on yourself and remember what a great parent you are because if you are worried about it then it matters to you and you care. If you're taking steps to try and shelter your kids, or help them through while on this road then you are being proactive and that's fantastic. But I know hearing those things and actually not having the feeling that you are totally screwing up your kids is easier said than done. There is nothing worse than feeling like you are the cause of your child's pain and the feeling that you are screwing this parenting thing all up. However, we are not. We just have to keep doing the best we can and taking things one step at a time and dealing with one thing at a time. If you are struggling with giving things up with your kids it's ok, just find new ways to be engaged that are within your abilities and talk to them. And hang in there, we can do this!<br />
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Finding new ways to have fun with my girls! We love playing music together!<br />
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They are my world! </div>
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Here are some links to other posts, articles etc... on parenting with PD you may find helpful.<br />
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Parenting with Parkinson's:<br />
<a href="http://natashachronicles.blogspot.ca/2015/10/parenting-with-parkinsons.html">http://natashachronicles.blogspot.ca/2015/10/parenting-with-parkinsons.html</a><br />
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Guilt is to Motherhood as Grapes are to wine:<br />
<a href="http://natashachronicles.blogspot.ca/2014/08/guilt-to-motherhood-is-like-grapes-to.html">http://natashachronicles.blogspot.ca/2014/08/guilt-to-motherhood-is-like-grapes-to.html</a><br />
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Parenting with PD, an interview with former NBA player Brian Grant:<br />
<a href="http://natashachronicles.blogspot.ca/2016/10/brian-grant-life-with-parenting-with.html">http://natashachronicles.blogspot.ca/2016/10/brian-grant-life-with-parenting-with.html</a><br />
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Article in a local paper:<br />
<a href="http://www.theguardian.pe.ca/news/local/2015/9/4/young-people-also-get-parkinsons-as-p-e-4268415.html">http://www.theguardian.pe.ca/news/local/2015/9/4/young-people-also-get-parkinsons-as-p-e-4268415.html</a><br />
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<br />A Broken Body's Journeyhttp://www.blogger.com/profile/15391303465189571744noreply@blogger.com0tag:blogger.com,1999:blog-5650477214399916268.post-62077080068526709132017-03-09T23:05:00.000-04:002017-03-09T23:21:08.536-04:00Genetic fairness Legislation PASSED!!! History made in Canada! <div class="separator" style="clear: both; text-align: left;">
Yesterday 150 Parkinson Canada Ambassadors across the country along with countless others with the Canadian Genetic Fairness Coalition and Neurological Health Charities Canada helped make history!!! Canada was the only country in the G7 that did not have laws in place to protect their citizens against DNA discrimination, but that all changed yesterday!!!</div>
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Here is a follow up interview with CBC Radio about the win!</div>
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And this was the previous CBC story:</div>
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A note to the Ambassadors from Parkinson Canada's <b style="background-color: transparent; font-size: 11pt;"><span lang="EN-US"><span style="color: #444444;">Jacquie Micallef</span></span></b></div>
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<span lang="EN-US"><span style="color: #444444;">Sr. Manager, Public Affairs & Partnerships:</span></span></div>
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<span lang="EN-US">Last night Canada made a big step towards ensuring Canadians can make informed decisions about their health – without fear. <o:p></o:p></span></div>
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<span lang="EN-US">Bill S 201, an act to prohibit and prevent genetic discrimination, was passed last night in the House as it was presented by the Standing Committee on Justice and Human Rights. <o:p></o:p></span></div>
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<span lang="EN-US">Parkinson Canada has been identified by the Canadian Coalition for Genetic Fairness as a leading member of the genetic fairness movement. Since day one (many, many years and 3 bills ago) Parkinson Canada and the Ambassador Network has been advocating for this legislative change. In fact, genetic fairness was named as a pillar in Neurological Health Charities Canada’s original brain strategy document developed in 2010. <o:p></o:p></span></div>
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<span lang="EN-US">Thank you to all of the Parkinson Ambassadors for being incredible champions in communities across Canada. Over the years, Parkinson Canada has logged hundreds of engagement points between Ambassadors and MPs about genetic fairness. In the last week alone Ambassadors contacted MPs over 200 times requesting them to vote in favour of Bill S201.<o:p></o:p></span></div>
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<span lang="EN-US">Bill S201 still needs to go back to the Senate, but all indications are it will be supported.<o:p></o:p></span></div>
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<span lang="EN-US">I’ll keep you posted!<o:p></o:p></span></div>
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Thank YOU for helping to make this historical change!<o:p></o:p></div>
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Best Regards,<o:p></o:p></div>
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Jacquie</div>
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Today was a day of celebration!!! Thank you to everyone that worked tirelessly on this initiative and to the MP's that did the right thing by voting YES to Bill S-201!!!<br />
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It was a pleasure to be a small part in helping protect Canadians and so very exciting when I finally heard the outcome! I would personally like to thank my MP Lawrence MacAulay for doing his part in pushing for this legislation, he was a huge support of it from my first meeting with him face to face about it in June of 2015!</div>
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Thank you all!<br />
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Here's a previous post about this issue: <a href="http://natashachronicles.blogspot.ca/2016/12/dna-discrimination-are-you-serious.html">http://natashachronicles.blogspot.ca/2016/12/dna-discrimination-are-you-serious.html</a></div>
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Natasha</div>
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Thank you Hon. Lawrence MacAulay</div>
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I know you weren't in Ottawa for the vote as you were travelling on Agriculture business. However I know you worked hard to push this through it's stages and were a great support all along!</div>
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<br />A Broken Body's Journeyhttp://www.blogger.com/profile/15391303465189571744noreply@blogger.com0tag:blogger.com,1999:blog-5650477214399916268.post-46753042751940911302017-01-25T06:16:00.000-04:002017-01-25T06:21:24.664-04:00Mental Health & Parkinson's Disease... #BellLetsTalkWell today (January 25) in Canada an initiative called "Let's Talk" where Bell Canada helps end the stigma around mental health. It supports research, helps improve access to care ensuring psychological health & safety. They donate 5 cents for every call, text or social media using #BellLetsTalk in 2016 6.3 million was donated. <br />
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So I thought today very fitting for this post that has been looming in my head for a while now. Too fearful of people's opinion's to share it. It's really heartbreaking how something as important as mental health, but the reality is people are embarrassed of it, they feel depression or anxiety or anything related to mental health that we are struggling with makes us weak. I say us because I struggle with it too, I never did before PD and although I like to think I didn't think negatively towards it or people who suffer; I'm guessing that with my own fear and inability to share that maybe I did. I've said before there's the odd time I find it very difficult to write a post, that my goal of this blog that originally started as a journal to get things off my chest was to be fully honest. That was before I decided to share it and before it was ready by as of today over 62,000 people around the globe. Now with often 10,000 readers a month that's a bit harder to be honest about the really tough stuff nobody wants to discuss or admit. Perhaps more so due to the friends & family in my own community that will read it, who I don't let know. So yes I am seeing full on through my own eyes the stigma around mental health sometimes one which might simply be created by ourselves in our own heads, but there has to be an underlying reason we do that. So today I will power on and keep writing this difficult story.<br />
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Many would think getting diagnosed with Parkinson's would easily be enough to become depressed. And yes indeed of course that happens. However in addition to that many people get depression, anxiety and issues with apathy as a symptom of the disease not because you are depressed you got it. Not unlike myself, who never had an anxious bone in her body and now I suffer with social anxiety part of which is a fear of people seeing my symptoms which sounds ridiculous because everyone knows I have PD. I try really hard not to but I do withdraw socially overall which is common. I go out less, I interact less, I stress more. The biggest challenge with this is the more you withdraw the less your friends and people you care about will bother with you. Especially if you aren't talking and honest about why you're often saying no to an invite etc... The phone will ring less by a friend who used to call often, the door won't get knocked on as much and then the vicious cycle continues. Often people will look at this as a two way street and have the attitude of "well they never call me either anymore" but if they are struggling with such things they likely won't because they're withdrawn. If you're reading this and you are said friend, family member etc... with a loved one with PD (or not) that this is hitting home with, stop letting life get in the way, we are all busy make time for people you care about. ASK how they are doing. <br />
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Now, deep breath.... I see a psychologist once a week. Dear lord I just said it. Yup that's right, I started to go to one back in November. I still feel embarrassed when I walk into the building and have the thought in the back of my head "I wonder if anyone I know will see me going in there". When really I should be proud of myself for going and seeking help if I need it. But that's just not the way we think in this day and age in our society. Why do I go, you are wondering? Well in a nutshell I had to give up my career in August of 2013 because I was unable to do my job. I wasn't diagnosed yet and just assumed that the doctors would figure it out and I would return to work. I worked hard for my career and I loved it. When the diagnosis finally came, treatment started and it was evident that although life changing on being able to get up and walk etc... that my right hand didn't hold a pen well if at all, fine motor skills were only semi ok for very brief periods of time and so on... It was official that my career had been taken away from me because of this disease. The blow of being diagnosed wasn't something that caused a great depression because after 15 long agonizing months it was a relief to know. Giving up my career was a blow however and I struggled greatly with it.<br />
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However, because of struggling with said loss of career I tricked myself into believing that I had dealt with this loss. When in reality I did not deal with it at all, I simply jumped in feet first and replaced it with being a stay at home Mom. I only had one home with me, my little Izabella, as her big sister Samantha was gone to school by then. If someone would ask what I did for a living I could say that, I didn't have to say well I have Parkinson's and Dystonia and I'm on long term disability. Although I was never the Mom that had the wish of being at home with my kids despite my love for them I consumed my life with my new "career". And then............................................ the day came, this past September when my baby got on the school bus with her big sister and I watched them drive away to their adventure for the day. Then I turned and walked back up the driveway admittedly tears streaming down my face (which was fine, I also did with my eldest, it's emotional to see our babies grow up) and I walked back into an empty, quiet, lonely house. I remember thinking that day "what the hell am I suppose to do now?" To be honest I'm still trying to figure that out, hence going for counselling once a week. I'm trying to get the tools to deal with my anxiety and to cope with feeling like I have no purpose and trying to figure out again what that is. I'm trying to learn to be honest fully with all the changes and things Parkinson's has done both to me and for me and see things in a different perspective. I go to try and figure out my way moving forward.<br />
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Did I come to the decision to get therapy easily? No, not at all. I thought about it on and off for all of September and October always making excuses over why I didn't need to go. Always the stigma of what people would think looming. I left the house less, I would buy everything down to laundry detergent online so I wouldn't have to go to a store. I would have days where I would not shower or get dressed other than to take the kids to their activities or the usual things I did/went to. I said no to invitations a lot and subsequently those are less and less. I didn't answer the phone often and then it rang less. I felt like I had no impact in this life, no purpose and that I didn't know what I was suppose to do moving forward. Thankfully I'm now starting to figure that out again. Thankfully I didn't let it persist for very long, I realized quickly that staying in the house, not getting dressed or showering was NOT a good thing and not beneficial in any way. Seems like a no brainer but if you are struggling it's easy enough to happen. So I started with my calendar. I scheduled something every day of the week with the exception of Friday. Something I had to do or attend every day that would force me to get dressed and out of the house. That in itself made a big difference. If you are reading this and this is hitting home to you, I urge you to talk to someone AND to schedule yourself. It made a huge difference in how I felt by getting out of the quiet, empty house even if it was just for an hour. And then going to talk to someone who doesn't know you, has no opinions of you or your life and is completely impartial is a great thing to do. We can have people that care about us give opinions often,, suggestions, ideas etc... their intentions are good, no doubt about it. But they do not understand what you're going through no matter how well you try and explain it and then other things will factor into it like your own relationship quirks, opinions etc... This aside from embarrassment is another reason that virtually nobody knows I've been going for counselling. <br />
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I did share at our last local support group that I was going to a psychologist and even though these people are like my family and I'm likely able to be open with them more than anyone in my world I felt like there was a cement block on my chest as the words were coming out of my mouth, I was consumed with a panicked anxious feeling saying it out loud. Why do we do that to ourselves? Let's STOP doing it. Let's not be ashamed when we are struggling emotionally with something. Let's not be embarrassed if we are feeling anxious or depressed. Let's not bottle everything up because we are too damn worried about what someone else thinks. But sadly we live in a world of gossip and judgment and we have allowed ourselves to be victim to that and ashamed. I have no doubt there will be a text, a Facebook message, a conversation in person or on the phone with people I know about this blog post. "Did you see Natasha's blog, she's going to a shrink?" It'll happen, some will likely be in the context of wow I thought she was so well I would have never thought she needed a shrink... where as the more 'judgy' types will have the she's crazy she should have been going long ago. But you know what, neither of those matter. It doesn't matter if someone see's you walking into the office of a mental health professional either. If you are feeling low and you can't get out of your own way and you can't get past the funk you are in, to hell with everyone else and what they think. Go get help!<br />
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So today I thank #BellLetsTalk for doing their part in spreading awareness and ending the stigma. Today I feel terrified & brave all at the same time. But I'm gonna focus on the brave part. I'm gonna enjoy this big sign of relief and feel the joy in being fully honest, not embarrassed and REAL. Because life isn't always sunshine and rainbows and that's ok! Let us all be brave!<br />
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Wise words by the great Muhammad Ali, who had Parkinson's!</div>
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Don't surrender, as the inspirational Michael J. Fox says....</div>
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If you're in Canada and on the Bell network send as many texts as you can today, tweet, share but most importantly TALK. You can even put a custom frame on your social media posts.. Visit <a href="http://www.letstalk.bell.ca/">www.letstalk.bell.ca</a> for more information.<br />
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A Broken Body's Journeyhttp://www.blogger.com/profile/15391303465189571744noreply@blogger.com10tag:blogger.com,1999:blog-5650477214399916268.post-31774029333529681962016-12-31T08:15:00.001-04:002016-12-31T08:15:27.485-04:00It's all about perspective... <span style="color: purple; font-size: large;"><strong><em>"If you don't like something, change it. If you can't change it, change your attitude" Maya Angelou</em></strong></span><br />
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As we embark on the newness of a fresh year, rather than the typical goodbye 2016 I'm kicking you to the curb cause you suck let's instead say well hello 2017 what shall you bring!<br />
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I've been working lately on changing my perspective about things, situations, people. About myself and having Parkinson's & Dystonia at such a young age. My motto shall remain "Screw You Parkinson's" as I don't see it in a negative way, I see that in an 'I'm going to fight you and not give up' kind of way. However the last few years have been tough, spending 15 fearful, confusing, sad months wondering why my body wasn't working and why day by day it continued to get worse was horrible. Getting diagnosed although I joke that after that long road of the unknown I said thank you and was grateful to finally know what was wrong, it was still awful. Nobody has a plan in life to get a progressive, incurable neurological disease let alone two in your mid 30's. Dealing with progression and the fact that I started out in the spring of 2013 with one prescription and 4 pills a day and now as 2016 comes to a close I have three & 18 pills a day. Although the outside world doesn't see it for the most part because my constant tweaking and additions of medication keep me looking and functioning at the same level as before for the most part it's a real hard pill to swallow, pardon the pun. Progression is and will continue to be a real struggle. Realizing that I did not cope with having to give up my career like I tricked myself into thinking by replacing it with being a stay at home Mom; only to have my youngest start school this fall and reality slap me in the face was eye opening and a challenge. One which I'm still working on.<br />
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Now how does one take all that negativity and see it as positive? Well it's a work in progress and a one day at a time thing. The pitty party days shall remain, the days of being in a 'fog funk' as a dear Parkie friend of mine called it shall remain. But as I said to him it's a matter of clearing the fog before too much time passes to see the sun again. There is always joy in the journey as I always say but sometimes it's harder to find, balance if you will of good and bad. So here's my list on the flip side:<br />
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1. That long diagnosis period taught me to listen to my instincts, gave me confidence to never let someone else (Doctor or otherwise) sweep it under the rug when I know better. To be my own health advocate and that sometimes you have to fight for yourself because nobody else is going to do it.<br />
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2. Getting diagnosed taught me to have courage and learn acceptance. Acceptance in particular is something I needed to get better at in all areas, accepting of disease, of offers of help, of how other people differ, accepting my own life & situation etc... <br />
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3. Dealing with progression taught me patience, teaches me to slow down and learn to say no as sometimes I have to take care of me first, to accept help. I've never been good at putting me first or accepting assistance, I'm still a work in progress in that regard. But most importantly to savor life's moments and not take time or memories for granted, not push something off to another day.<br />
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4. Giving up my career, well being forced to is a better term is still one I have a tough time changing perspective on. However it has enabled me to grow in many ways. I've been able to take better care of my health and body and in turn help slow the progression by being able to exercise when I'm "on" where as if I was working I'd never be able to. I've been able to help reduce my cognitive impairment by taking up playing the fiddle & picking the guitar up again after 20 years. It has allowed me to continue to volunteer my time to groups & causes that mean something to me as I can do it when I have the energy and ability to do so on my own time. Most importantly it gave me more time with my girls, not simply the crazed supper, bath time and put them to bed in the evenings after a work day. It taught me to appreciate them more and my time with them. <br />
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So I suppose when one changes the way you look at things it's not all that bad is it? Perspective... It doesn't mean your situation, diagnosis or whatever you're dealing with isn't rotten but if you change your perspective perhaps you can find the good in it. <br />
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<span style="color: purple; font-size: large;"><strong><em>"The smallest change in perspective can transform a life. What tiny attitude adjustment might turn your world around?" Oprah</em></strong></span><br />
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So with all that in mind as opposed to previous years and me saying to hell with you 2016, there were too many hardships and I can't wait for you to be gone and a fresh year to start. I'm choosing to be grateful for all the lessons, the good times and the bad that the year has brought. The lesson's I've learned some of which were very hard. I've gone from wishing it gone to wishing it would slow down. Time for a Parkie that's progressing moves FAR too quickly and I'm only now seeing how wishing a year to be over and a fresh one to start is rushing time. It flies by on it's own there's no need to wish it away faster, so I shall breathe and take it all in and hope that I can focus on the moments and not rush things. After all as time goes on I'll continue to get slower so that should be easy right? Ha! My 8 year old daughter refers to me when my meds aren't working as a tortoise. When I asked her why a tortoise she simply replied "because turtles are slow but tortoises are slower!" Perspective from an 8 year old!<br />
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So may 2017 be a year full of balance, that you may see that any bad that comes your way has something good in it as well. That it may go by far too slowly. And that you find the joy in each and everyday.<br />
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A Broken Body's Journeyhttp://www.blogger.com/profile/15391303465189571744noreply@blogger.com2tag:blogger.com,1999:blog-5650477214399916268.post-28710660954245998482016-12-24T08:09:00.001-04:002016-12-24T08:29:30.536-04:00Merry Christmas my Parkie friends & here's to a healthy joy filled 2017On this Christmas eve and as another year comes to an end it's always a time of year where people tend to reflect on what life brought their way and what they hope to achieve in the coming year. 2016 like the last couple has had it's challenges, it's good times, it's rotten ones, lesson's, struggles and yes continued joy in the journey. <br />
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I've yet again had to experience progression, that dreaded word that those of us with the unwanted gift of the progressive neurological disease of Parkinson's receive and in my case Dystonia's progression as well. To the outside view looking in on my life, watching my movements when I'm out and about, life with PD likely doesn't look much different to them. My tremors are still usually non existent to the untrained eye, I'm still sporting my high heels (which I will never give up tremendous fight), I'm still 'on the go'. I'm still horseback riding for therapy once a week, I've taken up playing the fiddle and started playing guitar again after 20 years. I'm busy with my kids, coping well with a husband on the opposite end of the country where he works. I'm doing very well for a person with Parkinson's Disease. And this is all great and I count my blessings for all of that. However what the untrained eye doesn't see is the internal tremors, the ones nobody sees but I can literally feel my body vibrating from the inside out almost always. The untrained eye likely doesn't notice the rare times I do have significant tremors but keep my hands in my pockets or keep moving/walking so while still they aren't as noticeable. The untrained eye doesn't notice me wince with pain from Dystonia that's plagued my muscles in my arms, hands, calves & feet when I try and exercise or do certain things. The untrained eye does not see my morning shuffle when I first make my attempt to get out of bed (sadly usually at 2, 3 or 4 am most days). The untrained eye doesn't see me cry on the inside when the stiffness gets so bad it's painful. The untrained eye doesn't see the struggle & torment I sometimes experience emotionally while walking this journey with YOPD. The untrained eye doesn't see my eye roll of frustration every time the medication alarm goes off on my phone to take any of my three prescriptions 8 times a day totaling 18 pills daily in order to enable me to have said untrained eye not see any of the struggles. <br />
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Now that all didn't sound very Christmassy and joyful did it? However perspective is important. Although I struggle with too many pills going down the hatch and all the things noted, there are such important lessons and joy in all of it. I hate the pills but I am so grateful for them too, they are a gift, another one I wish I never wanted/needed but a gift none the less. (See an old post about the unwanted gifts of PD <a href="http://natashachronicles.blogspot.ca/2015/05/if-parkinsons-is-gift-that-keeps-giving.html">http://natashachronicles.blogspot.ca/2015/05/if-parkinsons-is-gift-that-keeps-giving.html</a>) If it weren't for all those medications the view looking in would be quite sad likely, full of pity even. It would be easier to see what Parkinson's is really like, how horrible it can be as you would watch me struggle to pick my feet up off the floor to move forward or saw me hunched over like a 90 year old, or worse saw me unable to walk unassisted, if you saw me barely able to feed myself because the tremors were so bad and so on. Because the reality is, that would be my life without the medications. So when thought of in that respect what a glorious gift it is! I shall try and remember that comment the next time I am rolling my eyes at a med alarm! There's also lessons in being strong even when you don't feel like it among all that. I may have fear and frustrations but I don't want my children to grow up that way, so it teaches me and they remind me daily to keep going and focus on the joy in the day rather than the struggles. It's all taught me to focus on blessings and try and let go of things that we shouldn't hold on to. I suppose in a sense although not a death sentence like some diseases can be it teaches you to try and live life to the fullest, experience things that you might put off til another day but you don't as much now because you aren't sure you could do it as time goes on. It teaches you to not wait for certain things, to be present in the moment more. <br />
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I'm a very lucky woman, I have an amazing husband that puts up with my torment and my stubborn ways and loves me despite anything negative, loves me even with Parkinson's and an unknown future. I have two beautiful girls that are smart, funny, caring and keep me going. I have an almost one year old miniature dachshund named Xena that I've always wanted & keeps me company when my husband is away at work and my girls are both at school as now that I can't work that can be rather lonely. I have a roof over my head, people that care about me and there's so much joy in all of that. It makes my heart hurt a little for the friends I have with Parkinson's who aren't as blessed, who don't have all that to keep them going and keep them feeling uplifted on the days where we want to give up. And trust me no matter how positive I or any of us struggling with Parkinson's or anything else for that matter is, we all have our days where we just don't think we can go on and keep fighting. A Parkie friend of mine said to me just this week while having one of those days "sometimes you just need to have a cry and vent to someone who gets it. Because you just can't always do that with your family or close friends because then they worry too much. They think you're losing it or can't cope anymore." And this is so very true, I can assure you that if you have a loved one with PD chances are they fake it well for you, a lot. So just because they don't complain a lot or seem down be mindful of that, don't take their positivity for granted. Take time to pick up the phone and call just for a chat, just so they know you are still there for them. Take notice of their changes socially, emotionally and physically and talk to them about it I guarantee you they'll appreciate it.<br />
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I shall end with this... We are all lucky, we only have one shot at this life on earth and regardless of if you have Parkinson's disease or what the journey has thrown your way it can be a beautiful joyous life. As Christmas comes tomorrow focus on your blessings, seek the joy you had in the year and look hard enough to realize there was much more of it then there was bad days. As you laugh and enjoy time with loved ones, remember that not everyone is so fortunate. Some are struggling at Christmas especially with loneliness, pain, loss of loved ones etc... Reach out to anyone you know that might be in that place, make sure they know you care and be grateful for all you have to smile about. There is a lot in this life that is out of our control, but the one thing you can control always is your attitude, what you focus the majority of your energy on and how you treat others. Be kind to one another as Ellen says, and in that be kind to yourself too. We are often far too hard on ourselves. Because remember there IS Joy in each and everyday, even the ones that are rotten and make us feel like we are losing the battle. It is there, if you look hard enough for it on those days you will find it, even if it's a tiny piece of joy. And on the good days fill up your bank with as much joy as you can, store and put it in a gift box to hold onto for the days where you may need a little extra.<br />
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To my Parkie friends around the globe this Christmas and as we approach 2017. I wish you happiness, courage, new treatment options, medications that work so that those 'untrained eyes' around us see how well you're doing, strength and most importantly I wish you much joy. I hope despite any struggles this year has presented you with you can find the lessons in it and move onto 2017 with a fighting, winning attitude. I wish you health and happiness always and most importantly I say to you, YOU are not alone... We Parkies stick together, it is a community like no other, it's a beautiful gift which I am grateful for this Christmas and each day. And I say a very sincere Thank you to those of you I've come to know because of this journey, you are a blessing to me and I thank each one of you who have reached out to me and have given me strength and a person to vent or cry to on the days where I needed it from someone who understands. To the loved ones in my life, family & friends thank you for your support, love, encouragement and for being there for me even when I can be difficult. Thank you for your offers of help even though I need to work on being better at accepting them. Thank you for the love.<br />
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From my family in tiny little Prince Edward Island on the east coast of Canada to yours where ever you may be in the world... Merry Christmas & Happy New Year!<br />
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A Broken Body's Journeyhttp://www.blogger.com/profile/15391303465189571744noreply@blogger.com1tag:blogger.com,1999:blog-5650477214399916268.post-34223609399179700822016-12-02T08:05:00.001-04:002016-12-02T08:18:24.180-04:00DNA Discrimination... Are you serious?Yes you read that right! Is it possible to be discriminated against based on your unique DNA? Well in Canada sadly it is, but hopefully not for much longer. Hopefully the members of parliament for our great country soon have a unanimous yes to vote for Genetic Fairness Legislation.<br />
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Let me explain what this is all about, and let me first tell you that this is not only a Parkinson's issue, this is an issue that affects ALL Canadians, healthy or not. You see, Canada is the only Country in the G7 that does not have genetic fairness laws. We are not allowed to discriminate against race, gender, age, disability etc... but we can be discriminated against for our DNA. What this means is that an employer can not hire and/or not promote someone because of their Genetics. An insurance company can discriminate against us for our Genetics, potentially denying or increasing the premiums of that individual.<br />
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Now you're thinking ok that may be crazy but how does this affect me? I explain it like this, lets say you have a family member (parent, grandparent, aunt, uncle, etc...) who has heart disease or perhaps type 2 diabetes etc... Maybe they are morbidly obese, smoke, do not exercise, eat horribly and basically do not take care of themselves at all and this has resulted in said health condition. Would it be fair for you to be denied life insurance or given a higher premium than someone else because of that family member? Of course it wouldn't, but that's the reality in Canada. An insurance company, employer etc... can essentially discriminate against you for the 'possible' perceived future disability you may have. This is ridiculous and of course who's the only group fighting this legislation? You bet ya, the Insurance companies!!! They're claiming it will result in higher insurance premiums for all Canadians and all kinds of ridiculous things. When the reality is again Canada is the only country in the G7 that does NOT have this type of law and I'm pretty confident in saying that the bottom line isn't hurting for any of the insurance companies because of it. I don't see any of them going bankrupt because the US or other countries have these laws to protect their citizens. So if you are buying the crap the insurance companies are selling in regards to Bill S-201 then I have some ocean front property in Arizona I would like to sell you at a bargain!!!<br />
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I have two daughters Samantha is 8 and Izabella will be 5 in just a few days time. The likelihood of them developing Parkinson's is likely no greater than it is my neighbor (after all I'm not contagious). So why should they be denied life insurance or medical insurance or pay a higher premium because their mother has PD? Why in the future should they be denied a promotion or career opportunity because there's a "chance" they could get PD? We are not allowed to discriminate against someone for a visible disability and yet we can for an unseen one. This is all really quite ridiculous and it needs to change now.<br />
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I urge you if you are a Canadian share this blog post, tag your local MP's in it on social media, send them a letter or email. Explain to them that this legislation needs to be passed AS IS, no changes required. It's our MP's jobs to work for their constituents not to please the insurance companies that are donating to their party. This has been years we've tried to get this law passed and our politicians should not have the best interest in a multi billion dollar industries at hand, they should be focused on the interests of Canadian's and what is right. So please spread the word and we hope they do the right thing and vote YES for Bill S-201 with NO changes.<br />
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Please find a report from CBC who recently did a feature on this that I was a part of:<br />
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Canadian Ambassador's, the photo on the left is myself & my MP Lawrence MacAulay after a meeting in regards to genetic fairness legislation, Seniors Strategies etc... <br />
Become a Parkinson Ambassador: <a href="http://parkinsonambassador.ca/">http://parkinsonambassador.ca/</a></div>
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These sweet girls of my deserve to have access to insurance of any kind.</div>
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As do ALL Canadians!</div>
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<a href="http://www.facebook.com/brokenbodysjourney">www.facebook.com/brokenbodysjourney</a> </div>
A Broken Body's Journeyhttp://www.blogger.com/profile/15391303465189571744noreply@blogger.com0tag:blogger.com,1999:blog-5650477214399916268.post-40244553890759640052016-10-25T11:56:00.002-03:002016-10-25T12:11:58.578-03:00What do you get when you cross Parkinson's & Dystonia?You get a boat load of meds and a bit pissed off! Dystonia & Parkinson's are both Degenerative Neurological Disorders. You can get Dystonia as a disease on its own or as a symptom of Parkinson's. For some reason people with Young Onset Parkinson's are more likely to develop Dystonia. YAY there's that gift that keeps on giving right? <br />
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It's been 2 years and 36 days since I was officially diagnosed with Parkinson's. 2 years and 7 months since first being told 'I think you have YOPD" and subsequently starting treatment. However it's been 3 years & 4 months since my symptoms started & the road to figuring it out began. In that period of over 2.5 years since starting treatment I'm now on my 3rd medication change/addition or increase. A tad bit frustrating to say the least. However the silver lining this time around was I was expecting it, it wasn't a denial based shock for the first time in my 7 trips to the Saint John Regional hospital for diagnosis and/or follow up appointments. Sadly I've gotten worse at least half the time. Of course I've gotten worse it's degenerative, progressive, those words we Parkie's hate because it's the one time "progressing" isn't a good thing. It's not like playing the guitar and progressing that's great, this not so much. <br />
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This bi annual 704km nearly 12 hour day that I make twice a year to see my Doctor was different. It was the first time I had a "list" of all the negative changes my body has been having. The first time that it wasn't him asking a question to discover progression, but me knowing full well I had indeed gotten a bit worse and wasn't in denial about it. Hate it yes, but not in denial. My forearms have begun to feel very tight and sometimes pain or ache much like my calves, hands & feet all which have been plagued by Dystonia. My ring finger on my right hand has started to pull in to the palm of my hand and often will twitch in that direction which is painful. My right leg has started to have noticeable tremors when standing still. My right foot started to tingle months ago in between my big toe & next one and up the top middle part of my foot, it now is numb all the time. It feels like when you go to the dentist and get frozen. My apathy without a doubt is much worse and I'm struggling with some emotional issues still like social anxiety and my new loss of identity having both my girls in school, being unable to work and home alone.<br />
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The long and short explanation of almost all of the above is the continuing gift of Dystonia. I have most definitely come to the conclusion that although Parkinson's Sucks, so does Dystonia and it in fact can be worse as it's painful. My forearms are Dystonic and there's a tendon in the right forearm that's significantly twisted and that's what's causing the pulling in of my ring finger. My caves are so dystonic that although the numbness isn't a result from the brain he figures it's a direct result of the dystonic muscles one of which is likely pressing on the nerve to my right foot. The increase tremors & stiffness are simply PD itself progressing. So the result of all this? Yup, you guessed it my medication alarm will be going off more often. I'm not getting enough levodopa so I have to increase a full extra dose a day starting this morning to try and keep my dopamine levels more consistent as There's too much time in between doses, I'm to try that for a week and then call the PD nurse for a discussion on how it's working. If it's a drastic positive change perfect, if not I must increase my dosage of pramipexole to 3 pills three times a day rather than 2 pills. If we make that increase it should also help with the apathy.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKL3AaIkefcUfbVWxQPSqNT9yoL_7Vsexa2OfwHzomh6P4lqt2jTQ_qqjf9ZYik32ub02qlKmc_IO9tyE2uFXi1UaM21vPIFN2ncy7Yz2N4ik2G_JvZmZWNKsUJWcIflmHv6MxLQfr65Yv/s1600/14212024_10157378557740501_8700791717807720783_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="168" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKL3AaIkefcUfbVWxQPSqNT9yoL_7Vsexa2OfwHzomh6P4lqt2jTQ_qqjf9ZYik32ub02qlKmc_IO9tyE2uFXi1UaM21vPIFN2ncy7Yz2N4ik2G_JvZmZWNKsUJWcIflmHv6MxLQfr65Yv/s200/14212024_10157378557740501_8700791717807720783_n.jpg" width="200" /></a><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRx5zwOiNrMXgY4xMdl8vaLCxachYRuF3QsO9P_XSgldg6hgnUQhWPb9-G1GUM1eAPgjcQU7VQ2P9zKXAwCLL45dIdJz8qd7JhJIqLlvIcFB6Yy-bbYusKJlUzNsG300tiA8w_WpSrBPbH/s1600/14203387_10157378568875501_2359453747978610589_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRx5zwOiNrMXgY4xMdl8vaLCxachYRuF3QsO9P_XSgldg6hgnUQhWPb9-G1GUM1eAPgjcQU7VQ2P9zKXAwCLL45dIdJz8qd7JhJIqLlvIcFB6Yy-bbYusKJlUzNsG300tiA8w_WpSrBPbH/s200/14203387_10157378568875501_2359453747978610589_n.jpg" width="150" /></a>On a positive note.... because remember even when things are rotten there is always a bit of joy in every day it's just sometimes really hard to find. However I've been playing the fiddle and taken up the guitar a bit again. I can't play the guitar long it hurts my dystonic hands but the fiddle has a small neck and I can play it longer. Since starting to play music I've been doing that at night rather than watching TV after the girls go to bed. I've noticed after doing that for a couple of weeks that I've been getting more sleep. Rather than my usual 3-4 hours a night I've been getting more like 5-6 consistently and sometimes even 7. I asked him if it was a coincidence and he said absolutely not. That I should continue to play music that there are tremendous amounts of research proving music therapy can be very beneficial in anyone but particularly neuro related sleep issues. So if you are having trouble like probably 90% of other Parkies sleeping, maybe take up an instrument, or listen to soothing music for at least 20 minutes before bed. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3B4SZjjzXOuaGBXO9Nusn0uITxORFOpwqOlQvXaaTR-GGff5bM4SF6LIaKwDFoS0dtKYN1KWfmclR2dZodF4fI1Lv-FNw4vSTknBtMRUyrtec9OnOqJ6R92rC8nZirWwvJdPxuCQ05C7T/s1600/14805588_10157655754870501_1362293885_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3B4SZjjzXOuaGBXO9Nusn0uITxORFOpwqOlQvXaaTR-GGff5bM4SF6LIaKwDFoS0dtKYN1KWfmclR2dZodF4fI1Lv-FNw4vSTknBtMRUyrtec9OnOqJ6R92rC8nZirWwvJdPxuCQ05C7T/s320/14805588_10157655754870501_1362293885_n.jpg" width="213" /></a>I shall end on this... I choose not to throw a pitty party this time. I choose to remain positive and find the joy I each day. Our circumstances may be entirely out of our control but our attitude daily is entirely up to ourselves. Wallowing in your negative circumstances in life whatever they may be will do nothing but make you feel worse and when you have a crap load of rotten stuff to deal with why in heavens name would you want to feel even worse? It's ok to be pissed off don't get me wrong and I most certainly am often at the cards dealt to me, but that being said life is precious we only get one chance at it and do you want to spend it being angry or do you want to spend it joyfully? So I shall choose to laugh at the crappy circumstances, make light of my situation because that's just how I deal and I think laughter is great medicine. I will choose to be grateful for the medication that's available to me that allows me to live my life not without struggles but where I still am fortunate enough that most people don't "see" my symptoms or how I'm affected daily. If it weren't for the many meds I take I would not be able to walk properly, I would often struggle to get out of bed if I could at all, I would be in severe pain 24/7 and life would be pretty bad. So if I think of it in that respect I am indeed very lucky and as my many medication alarms go off in the run of a day on my phone I will remember to be grateful for the pills that make my life possible while rolling my eyes! <br />
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I mean really, how lucky am I? Two beautiful girls to "play" with everyday!</div>
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That's a lot of Joy!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8uSiHywwr1WyzzTkuaCUvykQ248GuQN3PFXG-LaKNRqrrLD0iSc2Mgdbn7kfKF0qv1fcjG2BkVPqhqDljGNnLOPbkjEz5JmCzWFLoM0AYgH6lfEO85N3brN0Skr_2JwKEEM-5OJxdRm6j/s1600/medication-cartoon.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="252" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8uSiHywwr1WyzzTkuaCUvykQ248GuQN3PFXG-LaKNRqrrLD0iSc2Mgdbn7kfKF0qv1fcjG2BkVPqhqDljGNnLOPbkjEz5JmCzWFLoM0AYgH6lfEO85N3brN0Skr_2JwKEEM-5OJxdRm6j/s320/medication-cartoon.jpg" width="320" /></a>If you'd like to know more about Dystonia you can view a previous post about it here: <a href="http://natashachronicles.blogspot.ca/2016/05/lets-talk-dystonia.html">http://natashachronicles.blogspot.ca/2016/05/lets-talk-dystonia.html</a><br />
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A Broken Body's Journeyhttp://www.blogger.com/profile/15391303465189571744noreply@blogger.com6tag:blogger.com,1999:blog-5650477214399916268.post-21937813272301679132016-10-18T16:24:00.000-03:002016-10-18T17:11:08.554-03:00Brian Grant ~ Life with & Parenting with Parkinson's ~ A candid conversation between 2 Parkie's<span style="font-family: "calibri";">I had the utmost pleasure to meet former 12 year NBA
player Brian Grant while at the World Parkinson Congress.<span style="mso-spacerun: yes;"> O</span>n two occasions we had brief conversations
and photo’s taken.<span style="mso-spacerun: yes;"> </span>I was particularly
struck on the fact that despite his insane schedule that week with the
congress itself and media given it was happening in his home town, he never
rushed a conversation with someone with Parkinson’s that wanted to meet
him.<span style="mso-spacerun: yes;"> </span>He spoke on a couple of occasions and
participated in one of the panel sessions on living well with PD and he was
genuine, honest and very down to earth.<span style="mso-spacerun: yes;">
</span>I watched from afar on several occasions his willingness to oblige
handshakes and photo ops and he was attentive to each person that crossed his
path.<span style="mso-spacerun: yes;"> </span>I watched this with great
respect.<span style="mso-spacerun: yes;"> </span>In one of our brief conversations
I told him that he was very gracious to the countless people there
that wanted to meet him and that I thought that was extremely kind of him.<span style="mso-spacerun: yes;"> </span>He told me that when at other public events
if he’s tired or his tremors are bad or he’s not feeling great he has the
ability to simply leave.<span style="mso-spacerun: yes;"> </span>However that at
the WPC there was no way he could or would want to do that, he said he
respected the fact that people with PD wanted to meet him and speak to him and
he appreciated that they wanted to.<span style="mso-spacerun: yes;"> </span>He
said simply “how could I not take the time for them?”<span style="mso-spacerun: yes;"> </span></span><br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<o:p><span style="font-family: "calibri";"> </span></o:p><br />
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<br />
<span style="font-family: "calibri";">When I was given the opportunity to “interview” Brian for
an article for my blog I was over the moon!<span style="mso-spacerun: yes;">
</span>There was no way I would refuse that once in a lifetime chance.<span style="mso-spacerun: yes;"> </span>We were originally set to meet in person at
the congress to have our conversation however things were hectic for him and I
told his assistant that I’d be quite happy to chat with him after the congress
was over and things settled down for him.<span style="mso-spacerun: yes;">
</span>I was exhausted so I could only imagine how he was feeling given his
schedule that week.<span style="mso-spacerun: yes;"> </span>And well, it’s
pretty cool to be able to say that Brian Grant has my phone number, I’ve told a
few people “Brian called the other day we had a great 20 minute chat” Ha!<span style="mso-spacerun: yes;"> </span>I’m considering us friends now, but at the
very least he’s incredible and an inspiration to the PD community, we are lucky
to have such spokes people to bring awareness to the disease, particularly that
it’s not only old people that get it like him and Michael J Fox.</span><br />
<br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<o:p><span style="font-family: "calibri";"> </span></o:p><span style="font-family: "calibri";">To give you a brief background, Brian was diagnosed with
YOPD around 36 years of age, he had recently retired from his NBA career.<span style="mso-spacerun: yes;"> </span>It started with a slight wrist tremor while
still playing in the NBA where he joked in one of his speeches that upon asking
one of the team doctors about it and what it was they simply responded “old age”
as when you’re a professional athlete that’s considered old I suppose.<span style="mso-spacerun: yes;"> </span>Brian has 6 sons and 2 daughters and has been
married and divorced twice.<span style="mso-spacerun: yes;"> Below you'll find the questions I posed to Brian.</span></span></div>
<br />
<br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";"><strong><em>How did your children handle your Parkinson’s Diagnosis?</em></strong></span></div>
<strong><em>
</em></strong><br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">My older boys 20’s & late teens handled it
alright.<span style="mso-spacerun: yes;"> </span>They started to dig into
finding out what Parkinson’s is and how will it affect Dad.<span style="mso-spacerun: yes;"> </span>When they ask me things I try and be honest
and answer as best I can.<span style="mso-spacerun: yes;"> </span>I tell them
about new meds and things that can help life be better with PD and about dyskinesia’s
and other side effects.<span style="mso-spacerun: yes;"> </span>They’re at the
age where if I say something like that they run to the internet to Google what dyskinesia
is.<span style="mso-spacerun: yes;"> </span>My now 13 & 14 year old
daughters were quite young.<span style="mso-spacerun: yes;"> </span>They’d ask ‘why
does your hand shake?’ and I’d tell them because I have Parkinson’s.<span style="mso-spacerun: yes;"> </span>When they’d ask what that was I’d simply say
it’s when your hand shakes.<span style="mso-spacerun: yes;"> </span>And at the
time they would simply associate PD with a hand tremor. <span style="mso-spacerun: yes;"> </span>I always try and be honest with all my kids
about it but at the same time I don’t want to scare them.</span></div>
<br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";"><strong><em>Do you think overall it’s important to involve your kids
in your PD journey?</em></strong></span></div>
<strong><em>
</em></strong><br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">For me it was important, I can’t really speak for you or
anyone else, but for me I found it to be very important because if I’m not
telling them what PD is they might go to the wrong web site or the wrong
friends.<span style="mso-spacerun: yes;"> </span>I want to give them my definition
of it and what that means for me, because otherwise they could go to their
friend who’s Grandpa has it and what it means to them might be something
totally different.<span style="mso-spacerun: yes;"> </span>I want to make sure
the information they get comes from me.</span></div>
<span style="font-family: "calibri";">I even joke around with my daughter sometimes and I’ll
say ‘can you get me another sprite’, why can’t you get it Dad? ‘cause I have the
Parkinsons’.<span style="mso-spacerun: yes;"> </span>I try and laugh at myself
and allow others to laugh.<span style="mso-spacerun: yes;"> </span>It’s a
serious disease but as you know we have a chance to be around it’s not like
stage 4 cancer or ALS or something.</span><br />
<br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";"><strong><em>Did you get any advice on parenting with PD from anyone you
know with PD?</em></strong></span></div>
<strong><em>
</em></strong><br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">I didn’t get any advice specifically from Fox or Ali or
anyone, but who I do get information from is Soania Mathur, a GP in Canada has
a couple books out and anytime I have questions about the kids I always refer
to her.<span style="mso-spacerun: yes;"> (Below you'll see a photo of myself and the lovely Soania <a href="http://www.designingacure.com/">www.designingacure.com/</a>)</span></span></div>
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<span style="font-family: "calibri";"><span style="mso-spacerun: yes;"></span></span> </div>
<br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";"><strong><em>Do you think your Parkinson’s can enrich your children’s
lives in some way? </em></strong></span></div>
<strong><em>
</em></strong><br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">I think it can in some ways because for me up until I was
diagnosed I was like everyone else in the world, I was going to live forever,
always be healthy but once you’re diagnosed with a life changing disease like
Parkinson’s it changes your perspective, in fact it changed mine immediately.<span style="mso-spacerun: yes;"> </span>So I don’t want to put that burden on the
kids if they ask I’ll tell them but I’m not going to sit them down and talk
about specifics right now.<span style="mso-spacerun: yes;"> </span>Maybe someday
I will as I progress.<span style="mso-spacerun: yes;"> </span>They are involved
in the foundation I don’t make them go but they attend every event we’ve had
and they enjoy it, its fun.<span style="mso-spacerun: yes;"> </span>They’ve always
enjoyed participating in that stuff.<span style="mso-spacerun: yes;"> </span>My
older boys when they are home volunteer at any events and things we have.</span></div>
<br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";"><em><strong>What advice would you give to someone newly diagnosed
with Young Onset Parkinson’s?</strong></em></span></div>
<em><strong>
<span style="font-family: "calibri";"></span></strong></em><br />
<span style="font-family: "calibri";">I would tell them to take the time for themselves before
they try and help everyone else understand what’s going on with them.<span style="mso-spacerun: yes;"> </span>If you just get diagnosed other than your
partner, they need to know but as far as the kids and relatives and others come
out at your own pace.<span style="mso-spacerun: yes;"> </span>Unless there’s
questions being posed to you, like why do you look like that when you stare at me,
or why does your hand shake?<span style="mso-spacerun: yes;"> </span>Things that
aren’t normal to them and the doors open, then tell them.<span style="mso-spacerun: yes;"> </span>But I would advise everyone to do that at
their own pace and speed, to wait until you’re comfortable with it before you
let everyone else in.</span><br />
<br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";"><strong><em>And what advice would you give to someone who is a parent
and diagnosed?</em></strong></span></div>
<strong><em>
</em></strong><br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">The disease affects everyone so differently and we are
all in our own unique situation maybe you’re in a marriage or a single parent.<span style="mso-spacerun: yes;"> </span>The initial blow is so emotionally heavy, or
at least it was for me.<span style="mso-spacerun: yes;"> </span>I didn’t want to
deal with it right away, but then again I was going through a divorce and was
just retired there was so much going on in my life other than my
diagnosis.<span style="mso-spacerun: yes;"> </span>I will say this, once I was
able to explain to my kids what was going on with Dad I felt so much
better.<span style="mso-spacerun: yes;"> </span>It was like a big weight lifted
off my back, I didn’t care if anyone else in the world knew at that time they
were the ones that mattered.<span style="mso-spacerun: yes;"> </span>I was
focused on how it was going to make them feel, I didn’t want them to feel bad
or worry.<span style="mso-spacerun: yes;"> </span>And another thing I focused on
was I didn’t want to embarrass them.<span style="mso-spacerun: yes;">
</span>Sometimes when I’m at games<span style="mso-spacerun: yes;"> </span>and
stuff and I get surrounded by parents talking, I’m tremoring and stuff and in
my mind I feel like I’m embarrassing my kid when that couldn’t be further from
the truth.<span style="mso-spacerun: yes;"> </span>My biggest fear is embarrassing
my kids because if I saw that I was it would devastate me.</span></div>
<br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";"><em><strong>As you mentioned we are all very different and our
Parkinson’s symptoms are often unique.<span style="mso-spacerun: yes;">
</span>What are your biggest challenges as far as symptoms go?<span style="mso-spacerun: yes;"> </span></strong></em></span></div>
<em><strong>
</strong></em><br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">The tremor definitely and my gait.<span style="mso-spacerun: yes;"> </span>I’m assuming I’m walking normal but it
definitely feels different when I’m walking.<span style="mso-spacerun: yes;">
</span>And then there’s depression, I’m on medication for that which has helped
tremendously.<span style="mso-spacerun: yes;"> </span>Anxiety, here I am a
public figure trying to be a champion for this disease and help defeat Parkinson’s
and then get this deep anxiety that makes it really hard to go out and speak to
people.<span style="mso-spacerun: yes;"> </span>I’m sure you understand this (which
I most certainly do) but it gets so bad.<span style="mso-spacerun: yes;">
</span>My mouth will get dry, my eyes will get dry, and I start to tremor its
crazy.</span></div>
<br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";"><strong><em>Do you think your career in the NBA can help you in
living your journey with Parkinson’s?</em></strong></span></div>
<strong><em>
</em></strong><br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">It absolutely helps me; more importantly given I’m a
retired professional athlete I know how to be in tune with my body where as
someone else with PD may not be.<span style="mso-spacerun: yes;"> </span>When
something starts to happen with me that isn’t normal I think that must be
Parkinson's.<span style="mso-spacerun: yes;"> </span>I know how to train which can be a
curse too, I know how hard it is I know before I even start to do it.<span style="mso-spacerun: yes;"> </span>Sometimes I’ll think to myself I don’t have
to do that, I don’t have to be in tip top shape.<span style="mso-spacerun: yes;"> </span>I don’t know how to just coast and how just a
little bit each day can be such a help, no no I’m full bore ahead.</span></div>
<br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";"><em><strong>I was watching an older interview you had done where you
discussed that you weren’t sure “they” wanted to find a cure for Parkinson’s
and other diseases given there’s so much profit in medications for our
disease.<span style="mso-spacerun: yes;"> </span>What are your thoughts on that
today?</strong></em></span></div>
<em><strong>
</strong></em><br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">I think a lot of people make those statements, I still
think everyone is trying to find a cure.<span style="mso-spacerun: yes;">
</span>It doesn’t benefit drug companies to find a cure pushing forward.<span style="mso-spacerun: yes;"> </span>I think they have their place within the
Parkinson’s community because without them a lot of foundations couldn’t get
their programming off the ground.<span style="mso-spacerun: yes;"> </span>Not to
mention we need their medications in order to survive and I’m thankful for
those medications and hopefully someday when there is a cure they are
instrumental in putting it out there.</span></div>
<br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";"><strong>What do you hope you can continue to achieve with the Brian Grant Foundation moving forward?</strong></span></div>
<br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">We’ve gone through some changes and they’ve been very good. Right now our programming we have is our wellness retreats and our boot camps and also our nutritonal cooking classes.<span style="mso-spacerun: yes;"> </span>Those are the things we are trying to roll out.<span style="mso-spacerun: yes;"> </span>Our goal or at least my goal is in the next 5-10 years to be able to roll these things out in other cities where we go through things and organizations in those cities can adopt them.<span style="mso-spacerun: yes;"> </span>That’s my dream!</span></div>
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<o:p><span style="font-family: "calibri";"> </span></o:p></div>
<br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">We discussed anxiety and depression in a bit more depth
and in asking me if I experienced it I told him that I never had an anxious
bone in my body before, but now I suffer with what I refer to as social anxiety
and there are times it can be quite bad, cause me to withdraw and yet be lonely
at the same time.<span style="mso-spacerun: yes;"> </span>I told him that I find
it difficult to deal with the aspects of the disease that change your
personality, that change all the parts of you inside that you always knew
yourself to be.<span style="mso-spacerun: yes;"> </span>And he told me how he
feels the exact same way, that when he gets around a bunch of athletes or
friends he was always in tune to the moment and what had to be done or what he
was up to.<span style="mso-spacerun: yes;"> </span>And the thoughts of
depression or anxiety happening to him never occurred to him that it wasn’t that
he felt negatively towards people who had those issues but he just knew it
would never happen to him, until it did.<span style="mso-spacerun: yes;">
</span>And now he has to change the way he thinks about all those things
because there’s no surgery or treatment for these aspects of Parkinson’s
disease like there are for the motor symptoms.<span style="mso-spacerun: yes;">
</span>He explained how well depression medication works for him and made
a huge difference but nothing truly changes how our identities and what we’ve
always known to be ourselves being altered permanently.<span style="mso-spacerun: yes;"> </span></span></div>
<br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">We also discussed candidly Apathy and I told him how my
get up and go has gotten up and left and how it’s extremely difficult if not
impossible some days to get motivated to do something.<span style="mso-spacerun: yes;"> </span>That things I love I still procrastinate on
to the final hour and I was curious if he like many others had issues in this
area.<span style="mso-spacerun: yes;"> </span>He told me that he finds it very
hard to get motivated at times and he was often MIA in his own life space.<span style="mso-spacerun: yes;"> </span>He spoke of how he always put his hand in
his pocket or sat on his hands and all the things many of us do to hide our
tremors and that a point in time hit when he told himself he wasn’t going to do
it anymore that he didn’t care what people thought, but clearly he did and
still does.<span style="mso-spacerun: yes;"> </span>So sometimes it’s hard to
get out there and be motivated when you want to do something when in the back
of your mind you’re struggling with other things too.<span style="mso-spacerun: yes;"> </span></span></div>
<span style="font-family: "calibri";"></span><br />
<span style="font-family: "calibri";">Our conversation ended with him asking me how long I have
been living with Parkinson’s and a bit about my life which I thought was so
kind of him.<span style="mso-spacerun: yes;"> </span>I got the feeling that like
myself this wasn’t an “interview” like thousands he had done before.<span style="mso-spacerun: yes;"> </span>This was two people living with Young Onset
Parkinson’s Disease, two parents trying their best to be the best they can be
for their kids; two ‘young-ish’ people fighting a disease for a very long time
to come that were simply having a conversation about life with Parkinson’s.<span style="mso-spacerun: yes;"> </span>Or at least that’s certainly how he made me
feel and it was pretty awesome.<span style="mso-spacerun: yes;"> </span>We
talked about how we are lucky, I believe we share the same opinion on that and
that yes we have PD but it could always be worse.<span style="mso-spacerun: yes;"> </span>He truly is an amazing man and a wonderful
advocate and spokesperson for the Parkinson’s community and I’m very grateful
to have had the pleasure of meeting him, speaking with him a couple of times at
the World Parkinson Congress and having this lengthy conversation over the
phone with him.<span style="mso-spacerun: yes;"> </span>We ended our call with
him thanking me for following his foundation and for writing a blog and told me
to keep doing what I’m doing.<span style="mso-spacerun: yes;"> </span>And that
nearly brought me to tears hearing it from him.<span style="mso-spacerun: yes;">
</span>How incredible and gracious is he?<span style="mso-spacerun: yes;">
</span></span><br />
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<span style="font-family: "calibri";">You can find out more about Brian & the work his
foundation does at </span><a href="http://www.briangrant.org/"><span style="color: blue; font-family: "calibri";">www.briangrant.org</span></a></div>
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If you look closely you can tell I'm wearing heels the second time</div>
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I spoke to 6'9" Brian Grant in Portland! Ha! Ha!</div>
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To see more information and photo's from the World Parkinson Congress visit my Facebook Page</div>
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A Broken Body's Journey <a href="http://www.facebook.com/brokenbodysjourney">www.facebook.com/brokenbodysjourney</a></div>
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A Broken Body's Journeyhttp://www.blogger.com/profile/15391303465189571744noreply@blogger.com0tag:blogger.com,1999:blog-5650477214399916268.post-52014283188375134602016-09-22T03:57:00.003-03:002016-09-22T03:57:58.913-03:00If you haven't been to the World Parkinson Congress boy are you missing out!WOW is the word that comes to mind when asked to describe what it's like to be at the World Parkinson Congress here in Portland, Oregon. Was it worth the 5895 km trip to spend the week with over 4200 people from 67 countries either living with, caring for, involved in, researching or treating Parkinson's Disease? Absolutely & without question. AND it's not over yet!!!<br />
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I arrived in Portland on Monday evening. Technically today (Wednesday) is the first official day of the Congress, however I was here for "Day 0", the pre congress. I will admit my head is already spinning with still two days to go, the information is overwhelming not because the content is extreme but rather there's sooooo many choices for what you want to learn about. In fact I have myself wishing I had a clone or a travel partner so they could attend opposite sessions than I so not to miss out on any valuable information.<br />
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The Parkinson's community is tight knit and like no other, the genuine care, concern support & love for one another shines through. The amazing Parkie's out there with stories of hope, courage, strength, determination & how they find joy in their journey with PD is truly incredible. The experience is difficult to put into words, other than to say it's empowering, inspiring and very emotional all at the same time. Brian Grant, former NBA player with Young Onset Parkinson's spoke at the opening ceremonies and he was more admirable with every word he spoke. I'll write a bit more about him, his foundation & life with PD at a later time, so stay tuned. We were also in awe when the beautiful Maryun "May May" Ali took the stage with confidence, enthusiasm, honesty & grace. She spoke of her father the great Muhammad that the Parkinson's community admired and sadly has lost and his personal PD journey. How he was all about time, and how precious it is. She spoke of his love for magic and how he would perform his magic tricks as much as possible. But most importantly she spoke of his courage, his fight and his positive personality towards life & Parkinson's Disease. I think it would be impossible for there to be a person in the room that wasn't inspired by her address as well as Brian's. </div>
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I also had the great pleasure to meet some other inspirational Parkies. People who fight every day, encourage others with PD to do the same, challenge, motivate & inspire the entire community. And I must say aside from how amazing the content is of the various sessions (and there are a ton to choose from) meeting these people who share in the same battle although of various degree's and symptoms as we are all different, is an experience just as if not more rewarding than the congress overall. It's truly a remarkable experience one I will never forget and cannot urge you all to think about attending next time. Which by the way will be in Kyoto, Japan in 2019! <br />
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For instance this evening while attending an incredible film night that showcased short films from all over the globe and how people are facing PD head on, I had the pleasure to see the entire story of and meet Andy McDowell. Andy created a video submission for the last congress called "Smaller" which was one of the first things I showed my oldest daughter Samantha after being officially diagnosed. I thanked him for that and for his courage to speak up and spread awareness that some of us affected with PD have small children and are not 'old'. And although not better or worse or in any way meant to compare with someone who is older and their challenges, ours are simply unique when we have little people to care for ontop of it all. You can view his poem here: <a href="http://www.youtube.com/watch?v=3nI17vFWYaQ">www.youtube.com/watch?v=3nI17vFWYaQ</a> And his film "Switched On" can be found: <a href="http://www.youtube.com/watch?v=GJ3fDzCTXjk">www.youtube.com/watch?v=GJ3fDzCTXjk</a><br />
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Tim Hague Sr. was the Emcee for film night and you may recognize his name as the fellow from Manitoba, living with Parkinson's and the winner of season 1 of the Amazing Race Canada! He's also a fellow WPC Blogger and it was an honor to meet him in person this evening. I hope to get a chance to speak with him again before we both head back to Canada. You can check out his blog & some video links here: <a href="http://www.timsr.ca/watch-tim-speak/">www.timsr.ca/watch-tim-speak/</a><br />
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I saw this man's video before one of the sessions this afternoon for the first time. It was amazing, it came in 2nd place for the video submissions. This man is Superman for sure! Living with PD I believe he said 14 years now and rocking it! He said many years ago his young son told him that he was Superman and Parkinson's was his kryptonite. He fights everyday and is inspiring people myself included all over the globe!<br />
<a href="http://www.bing.com/videos/search?q=alfredo+riuz+parkinsons&&view=detail&mid=99747C5F080946B8C41A99747C5F080946B8C41A&FORM=VRDGAR">www.bing.com/videos/search?q=alfredo+riuz+parkinsons&&view=detail&mid=99747C5F080946B8C41A99747C5F080946B8C41A&FORM=VRDGAR</a><br />
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The beautiful Soania Mathur. Mother, Wife, Physician, Author, Educator, Ambassador & person living with Parkinsons. I was honored to have her sign her book I brought along with me. Ironically she's not only amazing and a Canadian but my family Doctor who thank heavens never gave up on me until we got answers on why my body was broken and her are good friends.</div>
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WPC Blogger and friend Laura Kennedy Gould, Blog: "The Magic Trick - Life with Parkinson's"<br />
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For more photo's and information from the Congress visit the A Broken Body's Journey Facebook page at: <a href="http://www.facebook.com/brokenbodysjourney">www.facebook.com/brokenbodysjourney</a> <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3_x2z2Y7MS8YcyQaMWfxzuMIdOTlshTKx0GcjJ2sHrdeg1d0C8zTNVkWpae374bPaj87SN9qwTpHQNYvS4VTOQ9HwtIKveOWdVvipKqqtZfdF3ANSD3jpXt8wTlyA7VriAcJW1j6K3p5a/s1600/14449927_1837608929794169_7839785669838989357_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3_x2z2Y7MS8YcyQaMWfxzuMIdOTlshTKx0GcjJ2sHrdeg1d0C8zTNVkWpae374bPaj87SN9qwTpHQNYvS4VTOQ9HwtIKveOWdVvipKqqtZfdF3ANSD3jpXt8wTlyA7VriAcJW1j6K3p5a/s320/14449927_1837608929794169_7839785669838989357_n.jpg" width="240" /></a>And sadly last but not least. My WPC Buddy suddenly passed away last week. I was so incredibly excited to meet and hang out with him this week. We started talking back in the spring and despite how incredible the congress is I'd be lying if I didn't say there was a slight bit of it being bittersweet. He's been honored with a moment of silence I know his presence is here with all of us and I can say with certainty he is thought of often. I attended the WPC Buddy reception without you both, shed some tears & wore my Dallas Cowboys hat in your honour.</div>
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Jason Arwine, thank you for the inspiration during the short time I knew you. Enjoy dancing with the angels free of any of PD's struggles. To you Heather, I'm so incredibly sorry and I still very much look forward to meeting you and hugging you tight.</div>
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RIP Jason Arwine</div>
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December 12, 1978 - September 15, 2016</div>
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A Broken Body's Journeyhttp://www.blogger.com/profile/15391303465189571744noreply@blogger.com0tag:blogger.com,1999:blog-5650477214399916268.post-22420192604466977182016-09-14T05:12:00.001-03:002016-09-14T05:12:12.111-03:00A Parkie's emotions gone wild!For those of us with Parkinson's Disease we know all too well what's it's like to have the waves of emotions come crashing at us like a raging sea. Because the reality of PD is that although most people know the common motor symptoms like tremors, rigidity, stooped posture etc... they usually know very little about the non motor symptoms of the disease which often can be just as bad if not worse. Loss of sense of smell, bladder & bowel dysfunction, insomnia (that stands out as I write this at 2am), drooling, cognitive impairment and the list goes on. Problems with apathy, depression and anxiety are extremely common as well.<br />
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Now as far as I'm concerned my husband had always tormented me that I was 'cold hearted' because unlike most women I never cried. It was a bit of a running joke for us and I teased him that he was like my wife because he was the sensitive, more emotional type. (Shhh, don't tell him I told you how much he cried at our wedding Ha! Ha!) Well my how times and rolls have changed now that I have YOPD. I find myself chocking back tears on a regular basis, anything can set me off, a commercial, a thought, a happy thing, a sad thing. I am always trying not to shed a tear it seems. I went from being a social butterfly to having social anxiety, it's a real struggle for me to step outside my new comfort zone and be out and about in a new social setting. I often am hurt by something or someone but have become somewhat of a doormat in a sense allowing people to take me for granted or be insensitive to my feelings for fear of losing a friendship or having to deal with a disagreement. As I've mentioned before in previous posts, the motor symptoms of Parkinson's are often very well controlled with medications like levodopa etc... but the non motor and particularly the changes in ones personality are tougher pills to swallow. To have your identity, who you've always known yourself to be change and it's completely out of your control can be difficult and challenging to accept. <br />
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It's an odd situation to feel like a social being that you always were, but yet now have anxiety about social situations which in turn can make a Parkie feel very lonely. I know that's complicated and confusing isn't it? Ha! But that's what it can be like, a constant struggle to remain the person you were before but accept the new person you are now. To force yourself to get out and about despite the fact that your give up and go has gotten up and left the apathy station. To not allow yourself to be lonely despite the fact you want to stay away from everyone. My what a juggle it can be, my head is spinning just typing about it and my logical brain laughs at how ridiculous it all sounds.<br />
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Now back to the emotions gone wild. I've most certainly had a week of a bit of a roller coaster that all of the above can sort of sum up. I've struggled with a loss of identity from having to give up my career, one which I worked very hard for and loved. It's been three years now since I've been able to work thanks to Parkinson's and Dystonia. Although I to some degree continued to mourn that loss I adapted and played some mind games to make it easier to accept. Like the fact when people would ask me what I did for a living, I would answer that I was a stay at home Mom. Not a false statement, simply a bit of an omission of the fact of why that was the case. I had one child in school and one at home with me, nobody questioned it, that thought process and mind game worked for me. Until.... it didn't. My sweet 4 year old Izabella, not to turn 5 until December hopped on the school bus last week with her big 8 year old sister Samantha and headed off to Kindergarten. You'd think after all the screaming and fighting they did all summer and how exhausted their Parkie Mom was from being an entertainment director to them all summer that I'd be the parent screaming for joy that school was back in!!! Well not so much, rather it was reality smacking me in the face. PD reminding me that although technically I have been a stay at home Mom for 3 years, that it was a forced situation. That I can no longer tell people when I'm asked that I'm a stay at home Mom, instead I'm a Mom, a Wife a woman who is on disability and cannot work because I have an incurable degenerative disease, two in fact because remember PD is the gift that keeps giving!<br />
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The first day both girls got on the school bus and I walked back into the very quiet house I was flooded with emotions, sad my babies are growing up, sad I am not heading to work, sad that there's no noise and sad at the reality that five days a week, ten months of the year (with the exception of when my husband is home from the opposite end of the country where he works) that I am all alone. I have been dreading this sadness for months now. I even got a mini dachshund puppy in the spring because I knew it would help to have a dog, my buddy and I love her and I'm happy I have her with me when the girls are gone. Now as a week passed putting the girls on the school bus got easier and I'm working on changing my mindset. I know I'll keep busy I always do. I have time for my various therapies now (massage, acupuncture, physio, horseback riding etc) that I struggled with packing in two days a week last year when my little one was in pre k. I can actually get to bootcamp 4 days a week now all the time rather than just when hubby is home. This is all good... All positive... I simply have to continue to remind myself of that, remind myself that I still have purpose despite not having a "career" and not having my girls home. Remind myself that I will continue to volunteer and do things that I love on the days I'm feeling up to it. It's a huge shift in my life, there's no doubt about that. I am sure I will still have sad days if I allow myself to overthink it much. But there is still a ton of joy in the journey, even on this bit of rough seas I've hit recently. I'm confident however that the sun will shine, the winds will die down and the waters will become calm and full of shimmering beauty.<br />
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Sometimes the hardest part about writing about my journey is being completely honest. In order to be authentic about my life with PD I have to admit the bad stuff, the stuff that irks me, the stuff that angers me, that makes me sad. Discussing the motor complications of PD are easy, but the non motor, particularly emotional symptoms are much more difficult. However in admitting it one must accept it. Like Michael J Fox said "Acceptance doesn't mean resignation. It means understanding that something is what it is and there's got to be a way through it." And I believe the way through it is finding joy in each day; which is the way I've tried to live each day since first hearing those two words that changed my life. I will cherish the quiet and look forward to the noise at the end of the day from my beauties. I will continue to push myself to be more social, to keep busy while finding the balance to not burn out like I have done to myself previously. I will continue to learn and seek the lesson in each situation. I will continue to write, to be honest and share the pieces of joy as I find them. Last but not least, as always I will continue to bask in just how very blessed I am to have the life I have, two beautiful daughters that are my world, a loving supportive husband (and a super cute puppy) and a great group of friends & family that support me. Yes the seas will get rough by times, but I'll ride the wave until they calm and enjoy the thrill of it all. Yup, there's a lot of JOY in all that!<br />
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My beautiful little family!</div>
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How could I not find joy travelling life's road with them by my side?</div>
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and of course my new buddy, Xena our 7 month old Mini Dachshund!</div>
A Broken Body's Journeyhttp://www.blogger.com/profile/15391303465189571744noreply@blogger.com4tag:blogger.com,1999:blog-5650477214399916268.post-46922928034550665232016-08-22T21:44:00.002-03:002016-08-22T21:44:44.771-03:00Portland, Oregon, here we come!!! 2016 World Parkinson Congress! It's hard to believe that the 2016 World Parkinson Congress is less than a month away now! I have to say I'm super excited to meet some fellow Parkie friends I've had the pleasure of making thanks to this blog that'll also be attending. I'm also beyond thrilled to have the opportunity to meet the other 15 official World Parkinson Bloggers while in Portland. Find all 16 of us here: <a href="http://www.worldpdcoalition.org/?page=BloggingPartner">www.worldpdcoalition.org/?page=BloggingPartner</a> I'm honored to be a small part of this amazing organization that puts on a convention like no other in the world! Where scientists, medical professionals, researchers, physicians & people with Parkinson's Disease will all come together under one roof for one amazing event jam packed with information. A unique opportunity for the Parkie's of the world to hear first hand information and arm ourselves with knowledge; after all knowledge is power. As well as the chance for the medical community to learn from those of us who live with the disease day in and day out. WOW, is what I have to say about that! There is no other health conference in the world like it that brings all these perspectives together.<br />
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So, what are you waiting for? Didn't register? Well log on now and do so, I didn't make it to the last conference in Montreal as it was prior to my official diagnosis, but I know many people who attended and said it was incredible. With a combination of plenary sessions, round table workshops, presentations & lectures it's sure to be likely a little overwhelming but in an amazing information gathering kind of way. And they have thought of everything to try and make the experience enjoyable for anyone with PD, there's even an area called "Wellness Way" with meditation rooms, renewal room, massage/reike and even a care partner room for those who attend as our support. There's an art walk, book nook (featuring books & authors that speak directly to us), the WPC Choir, Film you name it! They had the 'WPC Buddies program' where upon registering you could request to be paired with a buddy and have the opportunity to talk to them ahead of time so you'd feel like you knew someone when you arrived. I think this is brilliant especially for a group of people who can have social withdrawal and anxiety as a symptom. I was paired with a man in Texas and his lovely wife, Jason & Heather. We have a lot in common and have skyped and emailed back and forth and I'm really looking forward to meeting them in person. In the welcome package they even have cards to keep in your passport explaining you have Parkinson's and listing facts about the disease, an area to note your medication etc... They have this down to a science and I cannot wait to experience it!<br />
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For those of you who are reading and planning to attend I hope I get the opportunity to meet you, it's a privilege to be a part of your journey even though our road is a tough one, together we can lift each other up and always remind ourselves that we are not alone. So please, if you plan on attending and haven't registered yet don't wait another minute. Register here: <a href="http://www.wpc2016.org/">www.wpc2016.org</a> <br />
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I cannot wait to soak up information from the medical community, arm myself with whatever knowledge I can gather about how to live better with PD, find out about treatment options for the months and years to come & to meet so many others that know exactly what life with Parkinson's is truly like. It's going to be awesome, I'll see you in Portland my Parkie friends!!! <br />
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A Broken Body's Journeyhttp://www.blogger.com/profile/15391303465189571744noreply@blogger.com1tag:blogger.com,1999:blog-5650477214399916268.post-26333906881053245392016-07-23T07:31:00.001-03:002016-07-23T07:52:51.710-03:00Courage is dealing with one loss after another but continuing to find the joy in each dayChange is inevitable in life, but with Parkinson's it can be one frustrating/heartbreaking change after another. When you are diagnosed obviously there is a huge change in your life an a big focus on acceptance. However that mental state and process will continue to repeat itself time and time again as your new life with PD unfolds. I often joke that Parkinson's Disease is the gift that keeps on giving because the issues a person with PD can get tend to be astronomical when you combine the motor and non motor symptoms. However, jokes aside the reality is that it's really a disease that takes... a lot. <br />
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In the grand scheme of things I have been lucky and PD hasn't taken nearly as much from me as it has other Parkie friends of mine. However I've still suffered loss at the hands of the disease and one mourns loss when it's stripped from you and out of your control the same as one mourns a death. The disease has taken my career from me and although it's been 3 years now I still mourn it sometimes daily. It's one thing when a person retires and struggles with what to do next, or chooses to give up work to be an at home parent or whatever the case. However when your career is taken from you and you love it and it's out of your control it's a great loss. I've spoken of it before and how it feels like a loss of identity. Sure I keep myself busy volunteering on my "on" times and busy with the kids, I do that so I don't go crazy and feel totally useless. But I can assure you that for anyone living with Parkinson's disease or any other health issues that has been forced to give up their careers they struggle greatly with this. I think it's worse for those of us who are younger, but regardless of age it's something the disease has taken from you, it's out of your control and it's hard to accept.<br />
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Then there are the typical losses of friendships/relationships, sad but true it happens. Any major crisis or change in life tends to show you who your true friends are and getting sick or diagnosed with something like PD is no different. And it's definitely confusing, frustrating very sad and something you mourn when you lose someone from your life you love. I've been here and I know most people I know have as well. Other typical loses and things PD takes from you are physical. Perhaps it takes your ability to hold a fork with food on it with ease because your tremors are bad. Maybe it takes sleep from you as most of us with PD suffer from Insomnia or at the least severe fatigue. It could be your ability to perform a certain task that has been taken from you maybe you used to play guitar but now you cannot. There are so many things that are taken from us.<br />
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And then there's the big things that are taken from you, the make you want to crawl in a hole and bawl your face off or punch holes in the walls. I have witnessed this from some of my older Parkie friends and it's terrifying to watch. For someone who's young onset it's like a glimpse into your future, it's heart breaking and you feel helpless. When PD hits the stage where it takes the HUGE things from you like your independence it must feel like your entire world has come crashing down on top of you. When you're told that you can no longer be home alone, you need round the clock care, you are no longer able to drive your car in turn losing the last things you've held onto in your mental game of feeling like you still exist, that you still have some form of an independent life, that you still have some control. Let me tell you when a disease like Parkinson's takes from you, takes things you love, takes your independence, takes, takes and takes some more it is heartbreaking, it's crushing, it's depressing and it's so very very hard to accept. And although I haven't gotten to the stage I'm speaking of here I know the tremendous feeling of the dark cloud overhead and the empty feeling inside from losing my career, fine motor abilities, sleep and some friendships. I know what it feels like to put on a brave smiling face when you go out in public when you feel like your dying inside. I know what it's like to want people to think you've got this, you're strong and a fighter and then cry yourself to sleep at night. I know what it feels like to know your family & friends love you and want what's best for you, but at the end of the day you feel entirely alone because nobody truly understands what you're feeling physically or emotionally. So when I see people I've come to love who have this disease who have hit those walls far beyond where I am in my PD life I do understand to some degree the anger, the resentment, the fear, the sadness they must be feeling. And watching it scares me but also breaks my heart because I wish I could fix it for them.<br />
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But when it's all said and done, despite the unimaginable loss, all the things this disease "takes" we dust ourselves off, we put on a smile even when sometimes it's fake, we get stubborn, we fight and most importantly we find the joy in each day regardless of the battle at hand. And this is what keeps us going this is what sets apart the person who has given up from the courageous person who's continuing to go to war. It's not easy and I am positive that for those friends of mine who are at the later stages and having all the big things they love taken it's overwhelming. But I can tell you this, those people are still fighting, still finding the joy in their journey and although they have their moments they are amazing, to be admired, to be looked up to. They are brave beyond measure, courageous beyond your understanding and even when they are angry or sad they are still fighting with everything they have. So don't underestimate their super powers and most importantly their need to process their loss in their own way in their own time.<br />
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One of the worst things of being a younger person with Parkinson's Disease is that you become friends with and grow to love alot of people that are significantly older than you. You have a unique front row seat to the progression of the disease you have, you will watch people you love suffer, you will watch them struggle, you will hurt when they hurt and you'll be brave despite the fact that it scares the living daylights out of you. I sat by the hospital bed of a fellow Parkie not long ago who I have come to adore over the last couple years who is sadly in the final stages of his life and very unfairly battling cancer in addition to PD. As I tried not to cry for my own sadness this man continued to be joyful in that hospital bed, continued to talk to me about the joy he found in that day and the joy he would have in the day to follow. It was truly inspirational that when at a stage when most would just give up and want to let go because life and health have continued to take and take and take again that he could continue to be so positive. THAT is courage, THAT is bravery, THAT is admirable because acceptance sucks sometimes!<br />
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Courage comes in all forms, but when you continue to lose, when something like Parkinson's disease continues to take and a person continues to smile and look for the joy in the journey despite the extremely unfair hardships.... That my friends is to be courageous.... and to my Parkie friends who are suffering with so much being taken from them, you are the definition of courage because you continue to smile, you are brave, you are STILL strong although you may feel weak, you are still amazing and you are still YOU in all your wonderfulness.... These are the things Parkinson's cannot take from you, ever.... <br />
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Visit my facebook page: <a href="http://www.facebook.com/brokenbodysjourney">www.facebook.com/brokenbodysjourney</a>A Broken Body's Journeyhttp://www.blogger.com/profile/15391303465189571744noreply@blogger.com2tag:blogger.com,1999:blog-5650477214399916268.post-88103592771232076412016-06-26T18:54:00.001-03:002016-06-26T18:54:18.173-03:00"He who is not courageous enough to take risks will accomplish nothing in life" ~ Muhammad AliI think quoting the great Muhammad Ali is appropriate in a post about not giving up and pushing yourself as hard as you can. The world was saddened when this man left us, and the Parkinson's community of course felt the blow like an opponent to his punch. He was an advocate, inspiration and a fighter both in the ring and when it came to PD.<br />
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I find great inspiration in fellow Parkie's that refuse to give up and fight in ways that most people who aren't living in broken bodies would never think of. Like Alison Toepperwein, a woman the same age as I am, single Mom and not only living with Young Onset PD but literally kicking it's ass! She works out like a mad woman, she tosses herself in the air with rings grabbing onto the next pin, does chin ups like a champ, climb's stairs with her hands from the wrong side of the steps and a bunch of other insane things I cannot even fathom trying. Why you ask? Well because she's a fighter and she refuses to let PD take any more of her than it already has. She recently trained and got herself a spot on America's Ninja Warrior and her story before she ever got on the show is incredible, she's one of my new Parkie Mom Hero's without a doubt. Although when she actually hit the obstacle course she did not finish she's still a rockstar and although I have never met her in person I am incredibly proud of her, inspired by her and in total awe. <br />
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I've always talked about how exercise for me is done through 'fear based motivation', seeing people more advanced than myself, reading about what can happen as time goes on with this degenerative neurological disease motivates me to do the only proven thing to slow progression... exercise. And when I do and I feel better, and my body cooperates more it motivates me to try and get other Parkie's moving too. Now I do not claim to be even remotely anywhere in the ballpark as Muhammad Ali or Alison Toepperwein, but I do know one thing for sure. I too am a fighter. I too am determined. I too work as hard as I can. I too refuse to give up... And when you see people fighting as hard as they can despite their disease/obstacle, then really what excuse do I have?<br />
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I finally caved after a year of fighting it and added another medication (Mirapex) to my current levodopa cocktail. The thoughts of being 38, on treatment for less than 2 years and already needing a second drug were horrifying to me. However with painful Dystonia (neurological movement disorder that causes muscle twisting which people with YOPD often get) making it nearly impossible to exercise because just standing was excruciating combined with my levodopa wearing off in 2 short hours I just had to finally take my movement disorder's neurologists advice. As usual he was right and I should have done it sooner, but sometimes I just need to find my own way in my own time, this disease is still relatively new to me after all. With significant improvements however it was time for bootcamp again. I've gone to a place called 3rd degree training for several years now on and off since having my second daughter. Since getting diagnosed with PD I have done portions of an 8 week round here and there but it's been very hard and I never pulled off more than 3 classes in a week. I decided however that this time was going to be different. No excuses not even Parkinson's Disease. I was doing this and I was going to work hard even when it felt nearly impossible. I would modify what I had to (the team there are wonderful to help me with this) and I would keep moving even during the moves the rest of the class were on that my wonky body couldn't do.<br />
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Well, I'm proud to say that I just completed that 8 week bootcamp. I combined bootcamp with a weight circuit class there once or twice a week and I worked out at 3rd degree 6 times a week for the first 6 weeks and 5 times a week for the last two because my hubby was away and that's all I could get to being alone with the kids. I modified ALOT of things especially in the beginning weeks, the Dystonia in my legs acted up horribly during class particularly in the later weeks requiring me to go for physiotherapy, massage therapy & acupuncture treatments each week in order to get enough relief from the pain in my legs to keep working. I showed up with weird braces on my ankles, my legs taped up with sports tape and looking ridiculous a lot of times but I showed up. I had tears during a couple of classes from frustration of how hard some things are for this body and I even bawled and cried the entire way home from a morning class around week 4. Not because it was a bad workout or painful but because I was flooded with emotions. I had many sweet kind bootcampers tell me how great I was doing and that when they think they can't do it they see me and figure they have no excuses, they are all beyond supportive and kind. However on that day I didn't want to be anyone's motivation, I just wanted a normal body that could go do all the same things the rest of the class was doing. So it didn't come without it's challenges or meltdowns on occassion but that's ok.<br />
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I don't tend to shake much, my main issues are stiffness, being hunched over like the hunchback of notre dame when my meds aren't kicked in & the pain from Dystonia. However when I work out and get using the muscles on my right side I shake quite badly. But, by the time week 8 hit, I barely shook during a class. I would still during balance moves, for some reason balancing brings it out, and if I did a lot of upper arm stuff, planks etc... I had people comment to me that I wasn't shaking, or that I only started to shake at the end of class. I got strong, I could do a tricep hold from my toes where as at the beginning I could barely pull one off from my knees. I could hold a plank even when shaking for a really long time. I found muscles I thought were lost like my abdominals and although I still can't see them I know they are there because they burn when doing core work, Ha! Ha! I slept better (insomnia and sleep issues are a huge problem for people with PD), my anxiety reduced because PD is the gift that keeps giving and anxiety and depression are symptoms. My entire body just worked better. In fact they say that you cannot get better when you have PD, that you can only "slow" progression through exercise, but the reality is... that's not true, or at least it's not for me. With adding the extra medication and much to my dismay taking 11 pills a day of three varieties combined with bootcamp I DID get better... I went from a 2 on the five point PD progression scale (5 being worst) down to a ONE... yup, that's right... Screw You Parkinsons! I'm in no way cured, if only that were possible, I still can't use my dominant hand for anything, still can't hold a pen to write and still am stiff and have lots of challenges through the run of a day and some days I'm crashed but overall I feel better! OH and I am happy to say I lost some inches & toned up, although I do not go anymore for size or appearance, I go to kick some PD's ass but it's certainly an added bonus!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLBSeqTLCOZoXbrOjj120xwAN77DVLZGo2-Hyz_du5u5JQao1mn3QRo0umWbrYoDjfcTbXVQqW8VtA1nLGgDZQlUOX2CKmbtdtE9cOqO3hWyCyVPZJaEUI4FunMR0rrtpchuR1gNyA-Ayh/s1600/3rd+degree+2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="139" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLBSeqTLCOZoXbrOjj120xwAN77DVLZGo2-Hyz_du5u5JQao1mn3QRo0umWbrYoDjfcTbXVQqW8VtA1nLGgDZQlUOX2CKmbtdtE9cOqO3hWyCyVPZJaEUI4FunMR0rrtpchuR1gNyA-Ayh/s200/3rd+degree+2.jpg" width="200" /></a> <span style="font-size: x-small;">Before & After Shots from</span></div>
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<span style="font-size: x-small;">my 8 weeks at </span></div>
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<span style="font-size: x-small;">3rd Degree Training</span></div>
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The team at 3rd degree training are amazing, they continue to motivate me to not give up and encourage me to get one more push up in. They are kind and caring and best of all they don't care that I have Parkinson's they just want me to be the best I can be, and I love that! The people I work out with there encourage me and keep me going. I cannot wait to start the next round, I will continue to go even when I think I can't do it anymore.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijB2LjcW_clzicHTMOnj1hMDY1tkUjcKmc5xup2EqnE0IQCRmUWu19pBf9YrwKDO727WDeP-qHLje8rLz0r6dAL9TiZua_0fjoUaMMwJGhShkVSw8hfD-2e5P_WEhMJLvrRWnBi19Y_uxu/s1600/13515221_10157077920620501_1303077967_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijB2LjcW_clzicHTMOnj1hMDY1tkUjcKmc5xup2EqnE0IQCRmUWu19pBf9YrwKDO727WDeP-qHLje8rLz0r6dAL9TiZua_0fjoUaMMwJGhShkVSw8hfD-2e5P_WEhMJLvrRWnBi19Y_uxu/s320/13515221_10157077920620501_1303077967_n.jpg" width="240" /></a><br />
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I even got strong enough that I decided to take my own advice and stop saying "can't" or I "shouldn't" try that and gave vaulting a try! I take horseback riding lesson's once a week for therapy (balance, leg strength & posture work) and vaulting is basically gymnastics & working out on a moving horse! I thought there was NO way I could do it so I wouldn't try. However thanks to my workouts I had enough core and arm strength and I tried it and I LOVED it and cannot wait to try it again! <br />
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If Muhammad Ali can fight the way he fought both pre and post PD and inspire people, and Alison can train like a madwoman and be a Parkie on America's Ninja Warrior and this exhausted, anxious Parkie Mom of two can hit bootcamp or weight circuit 6 days a week and even try something crazy like vaulting and actually improve my PD symptoms; then what in God's name are you waiting for? Maybe you're not able or interested in bootcamp's or being a Ninja, but that doesn't mean you can't get off the couch, set goals for yourself and move. Do not sit there and let Parkinson's (or anything else for that matter) take control. This is your life, your one and only body you're going to get and YOU should be the one in charge of it's destiny. Fight for it, fight to keep it healthy and strong. Refuse to give up no matter how far along you are in progression, there's always something you can do to fight and to keep moving even if you have to do it all from a seated position. Think outside the box... Do not say "can't", say "I'll try".<br />
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As I've stated from the beginning and I think my very first post on this blog.... </div>
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<strong><span style="color: red;">Parkinson's you picked the wrong chick to mess with, so bring it on PD, bring it on!</span></strong></div>
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<strong><span style="color: red;">OH... and Screw You!</span></strong></div>
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I hope this is me someday!!! </div>
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Check out my FB Page, 'A Broken Body's Journey' <a href="http://www.facebook.com/brokenbodysjourney">www.facebook.com/brokenbodysjourney</a></div>
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And check out Alison's story here: <a href="http://www.nbcdfw.com/news/sports/TX-parkinsons-ninja-warrior-11a-062016_Dallas-Fort-Worth-383657551.html">http://www.nbcdfw.com/news/sports/TX-parkinsons-ninja-warrior-11a-062016_Dallas-Fort-Worth-383657551.html</a></div>
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A Broken Body's Journeyhttp://www.blogger.com/profile/15391303465189571744noreply@blogger.com0tag:blogger.com,1999:blog-5650477214399916268.post-78748712860261729922016-05-25T15:09:00.000-03:002016-05-25T15:09:35.312-03:00Let's talk Dystonia...Unless you have it, or know someone who does you likely have never heard of it or have any idea of what Dystonia is. Wikipedia defines Dystonia as:<br />
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Dystonia is a neurological movement disorder in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures. the movements may resemble a tremor. Dystonia is often initiated or worsened by voluntary movements, and symptoms may "overflow" into adjacent muscles. Treatment must be highly customized to the needs of the individual and may include oral medications, botulinum neurotoxin injections, physical therapy and/or other supportive therapies, and/or surgical procedures such as deep brain stimulation.<br />
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Now that you've read about what a boat load of fun dystonia can be you're likely wondering what does this have to do with Parkinson's Disease? Well, as I've said a million times before PD is the gift that just keeps giving. Not only does it hand out the typical motor symptoms of tremors, rigidity/stiffness, stooped posture, slowness of movement and such. It also has lots of fun non motor symptoms like loss/decreased of sense of smell, bladder & bowel dysfunction, depression, anxiety, insomnia and the list goes on. As if ALL of that isn't enough Parkie's tend to also get dystonia as a symptom of the disease. Yup that's right, because one degenerative movement disorder isn't enough, why not give them two to deal with simultaneously? So those of us lucky enough to get this extra gift must wrap it up pretty and do the best we can with it. You can get dystonia on it's own or as a symptom of PD and for some reason dystonia is also more likely to present in young onset patients with PD than older ones. I guess that's PD's twisted sense of humor kicking in, saying "well, you are in better shape likely than an older person who gets PD so we best throw some curve balls in there for you to make it a tad more challenging!" Didn't you know that Parkinson's is one funny disease, I suppose that's why I laugh so much at it and make jokes of it often. After all one might as well laugh as to cry.<br />
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I started to feel the effects of Dystonia first in my hands, when you get it in your hand they call it focal dystonia and sometimes even writers cramp. Initially it only hurt if I tried to hold a pen to write or use my hands for anything. As time went on however they started to ache and pain 24/7 right around the time I started having trouble with my feet and often could barely stand on them the pain was so bad. I had myself convinced I had planters faciatis, subconscious denial perhaps? I get acupuncture treatments in my hands every 3 weeks, I highly recommend it. Although it doesn't solve the problem I now only have pain when using my hands for any length of time as opposed to all the time before. That is a HUGE improvement. Not to mention acupuncture from a real acupuncturist can do wonders for a million other things whether you have PD or not. But I digress... A year ago my movement disorder neurogolist confirmed that my self diagnosis was incorrect and simply wishful thinking and in fact I had dystonia in my calves and the twisting of the muscles was pulling on my achilles tendon making the pain refer into my feet. He suggested botox injections which is the standard and apparently very effective treatment of dystonia. My mind however instantly goes to that's poison being injected into your muscles and no way am I doing that to myself. He suggested a medication called pramipexole (or Mirapex) which would be effective in helping not only the dystonia but levelling off my crashes from levodopa during the "off" times. I of course refused any more medication yet, you can read about that in the previous post. Long story short by the time last fall hit and I could barely walk let alone exercise I finally listened and added the new medication. It did wonders for my dystonia, I could walk again without being in extreme pain and as he said I was able to get working out again. <br />
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Now 7 months later I'm still walking pain free, still taking the added medication, still going for acupuncture every three weeks in addition to physio & massage therapy and still working out 5/6 days a week. However, the pain is resuming when exercising and in the moment can be bad enough to bring tears to my eyes. I'm not sure though that it's actually the pain doing that but more so the frustration I have because of it. It seems that dystonia is much harder to deal with and treat than Parkinson's is over all. Now I'm sure I'll have days where the opposite is true, but from my standpoint today PD is managed well with meds & exercise where the other isn't. I've found wearing ankle support braces and working out shoeless helps however that will cause problems in my feet down the road so it is merely a temporary solution. I will be returning to Occupational & Physio therapy to see if we can try something else, I may up the acupuncture treatments for a while as well and definitely must get those calves as painful as it is massaged more regularly. Long and short is my goal is to find a solution that doesn't involve botox injections into the muscle. Sadly however it seems my cycle is about 6 months of fighting it and eventually giving in. Whatever "it" may be, new meds, increased meds etc... What frustrates me the most about this scenario is that when it came to new medications or increases my initial response was "not yet, it's too soon" when I would fight it. I always knew I'd need to do it at some point. However with botox injections my mind was set on never, ever, ever... and yet now I'm saying "last resort" and it feels as though that last resort is getting closer and closer. If any of my fellow Parkie's reading this is dealing with dystonia and you have found an alternative treatment to the injections I would love it if you'd take the time to send me a note!<br />
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At the end of the day I'm still doing very well, I'm still working out even if some days it frustrates the hell out of me and that is keeping my body working better plus it's helping with sleep issues and stress/anxiety. So giving it up on that is definitely not an option. It keeps me healthy, it keeps Parkinson's in check and from getting worse. Sometimes this broken body's journey hits some forks in the road where I have to find solutions to issues or decide which road to take. These forks are never easy and I suspect as time goes on will become even more difficult, but the important thing I try and focus on is that I still have choices. I can give up, or I can keep being stubborn and fighting. And I have learned to forgive myself for giving "in" on some of my mindsets knowing that sometimes giving in doesn't mean you've given up, but rather that you have made a hard choice to improve your quality of life even if there's a cost. And although you may have many great supporters in your corner you are on your own and the choice & direction you choose has to be made by you! Struggle with as many of them as you want, but regardless of the frustrations always take a minute to find the joy cause it's there even on a tough journey!<br />
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