May 23, 2016

"A mind that is stretched by a new experience can never go back to it's old dimensions" ~ Oliver Wendell Holmes Jr.

Two years ago today I was sitting at the Saint John Regional Hospital just a month after seeing a neurologist there that told me he thought I had Young Onset Parkinson's.  This time I was waiting to see the Movement Disorder Neurologist that specializes in the disease.  I remember feeling sick to my stomach wondering if after a year and a half of unknown, a year and a half of days where I had next to no fine motor skills, a year and a half after having many days where I could barely get out of bed and walk, a year and a half after many attempts to console my oldest daughters tears because she was scared her Mommy was dying.  A year and a half of hell...

I left that hospital 2 years ago today full of fear, anger, sadness but yet relieved.  I left after a 2 hour session with the Parkinson's Nurse followed by an appointment with the doctor; with a prescription in hand for levodopa to be taken 4 times a day.  The gold standard treatment/medication for Parkinson's Disease and another appointment date for 6 months later to confirm my diagnosis.  Because once diagnosed you are officially uninsurable for life (ridiculous, but that's for another post) and "labelled" they tend to wait on their official diagnosis until they can confirm the treatment works even if you have it, particularly in young onset cases.  Or so my Doctor tends to do particularly on early stages of the young according to his nurse.

Now, two years later life is so much different.  Although the medication did miracles in the fact that I had windows of opportunity to use my hand and the stiffness was much better so I could move freely it was short lived and I got worse in a year.  Dystonia in my hands, feet & calves was added to my long list of symptoms of the disease, that's another movement disorder that you can get on it's own or as a symptom of Parkinson's, particularly in Young Onset.  So now two years later after fighting it & my Doctor for six months I am taking 3 levodopa carbidopa a day, 2 controlled release of the same medication at bedtime so it doesn't wear off in the middle of the night and curbs the agony and 6 pramipexole a day, 2 at a time.  It irritates the hell out of me that my alarm goes off on my phone 7 times a day to take meds.  However after fighting my neurologist on the new medication this time last year I was a mess and unable to run anymore or do any real exercise.  Come last fall he assured me that if I would just trust him and add the pramipexole I would most likely get better and be able to run and do bootcamp again.

Now trust, that's a tough one for me.  I have no problem trusting that my doctor is an expert on Parkinson's Disease.  I have no problem trusting his advice for treatment when it comes to exercise and other alternative treatments.  However when it comes to medication I fight him every time.  Taking pills drives me mad and having to add more pills & new types in what feels like a short amount of time with this degenerative disease is a tough pill to swallow.  I'm going to turn 39 in October and I fight with every bit I have in me to not get worse and when I do and I need more meds it's a big blow.  However I'm trying to get better at trusting him in all avenues.  After all he is right every time or has been so far.  When I finally caved last fall and took the new med in addition to my levodopa I did get better.  As promised I was able to get working out harder again like I had before.  Now I do bootcamp or weight circuit at least 5 times a week sometimes 6.  It's still hard, but it is for an able bodied person, I still modify lots of things that my body can't do, but I am doing it.  So my advice to my fellow Parkies reading this is to NOT be like me on the trust side when it comes to your Doctor.  Do your research, be your own health advocate but trust their recommendations too and don't be as thick skulled and stubborn with them as I am.  I am working on getting better in this area.

Overall 2 years later life is good.  I'm very active, I work really hard to keep my body in check with exercise, the only proven way to slow the progression of this disease.  I still roll my eyes with every pill I have to take, but I know that I cannot live without them.  It's just part of the journey and one you have to accept.  And because of those 11 pills a day 97% of the time anyone that sees me would never guess I had YOPD and likely have a hard time believing me when I say I do.  Because of those pills it's rare I ever have to be out and about during an "off" time when they are not working, so unless you're very close with me or live with me you've likely never seen what it's like for me to complete a task if they aren't working.  I am determined and stubborn to stay active, healthy and keep my body working as best as it possibly can for many many years to come.  I am always thinking outside the box on therapies & currently trying to learn how to play the fiddle and possibly the drums to help with the cognitive decline that can come with PD.  I refuse to give up when it gets really hard, like I said in my last post we shouldn't say can't, just I'll try.  This is my journey, one I most certainly did not choose but rather had it forced on me but I can choose how I'm going to accept it, how I'm going to live with it and what my attitude will be about it.  And my attitude always has been and will continue to be "Screw You Parkinsons" cause you picked the wrong chick to mess with!  When I have my down and out days of feeling sorry for myself I try and kick myself in the rear and get that motto back front and center and if you ever see me being any other way then it's time to worry and time for you to start kicking me just as hard!

I am 38 years old and I have Parkinson's Disease.  I have known I've had it for 2 years now and I will have it for the rest of my life.  I am an a mother of two beautiful little girls and wife of an amazing husband.  I AM more than my disease (and so are you reading this) and I am going to live well on this journey and continue to find the joy at every turn, even when it goes downhill here and there.  And I will always be grateful for the people in my life that stuck with me through this & love me enough to pick me up on the down and up hill battles.

I've gotten alot of friend requests on Facebook through this blog and therefore I created a Facebook Page.  Here's the link:

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