Oct 10, 2018

Sometimes 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.

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!

Jun 26, 2018

Sometimes one remains quiet when there's nothing positive to say

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

Feb 28, 2018

When 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.

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:

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Jan 6, 2018

May 2018 be the year to embrace change, transform & fly....

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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