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".
Previous post on Neurological Music Therapy:
Neurological Music Therapy & How it can help PD
Previous exercise related posts & their benefits to PD:
Fear based motivation
It's hard to beat people that never give up
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