At 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!
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.
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!
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!
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.
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".
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!
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!
This 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.
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.
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.
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.
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.
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!
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.
An interview I did recently about the process to getting approved for DBS
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.
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.
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.
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.
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.
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.
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!
For now I shall remember these posts among my frustrations:
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.
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.
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.
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.
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?
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.
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Do 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!
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.
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.
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.
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".
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...
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.
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.
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.
And with that being said I write this brief letter below in hopes of educating people to not make assumptions based solely on appearances.
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:
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.
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.
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.
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.
The young Parkie with Dystonia... on behalf of everyone who has a wheelchair parking tag
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!
Here are some links of some of the things mentioned here that may be of interest:
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.
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.
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.
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?
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.
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!
And to my friend Caitlin, who was taken from this world far too soon.
Thank you for your friendship, advice, guidance, love and so much more.
The world is a better place because you were in it.
Rest in peace my friend...
Here's a link to a song I wrote about her and how amazing she was:
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"
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:
the ability to withstand wear, pressure, or damage.
"the reliability and durability of plastics"
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!
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.
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.
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.
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.
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...
I won't be defeated that easily....
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!
We called ourselves the PEI Pedalling Parkies!
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!
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.
Pre Trip Interview with CBC Radio's Island Morning Show
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"!
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.
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...
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.
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!
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.
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!
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!).
Day 5, departing Morell and arriving in Elmira, the final 54 km's
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!
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.
Post ride & a rather emotional recap of the trip with CBC Radio's Island Morning Show
Do not ever give up, dig deep & show Parkinson's
or whatever your struggle is who's boss!
You may just exceed all your expectations, crush all your fears
& have a journey of a lifetime!
The 7 of us who completed all 5 days,
all 273km, all 20+ hours in the saddle cycling Tip to Tip!