Oct 25, 2016

What do you get when you cross Parkinson's & Dystonia?

You get a boat load of meds and a bit pissed off!  Dystonia & Parkinson's are both Degenerative Neurological Disorders.  You can get Dystonia as a disease on its own or as a symptom of Parkinson's.  For some reason people with Young Onset Parkinson's are more likely to develop Dystonia.  YAY there's that gift that keeps on giving right? 

It's been 2 years and 36 days since I was officially diagnosed with Parkinson's.  2 years and 7 months since first being told 'I think you have YOPD" and subsequently starting treatment.  However it's been 3 years & 4 months since my symptoms started & the road to figuring it out began.  In that period of over 2.5 years since starting treatment I'm now on my 3rd medication change/addition or increase.  A tad bit frustrating to say the least.  However the silver lining this time around was I was expecting it, it wasn't a denial based shock for the first time in my 7 trips to the Saint John Regional hospital for diagnosis and/or follow up appointments.  Sadly I've gotten worse at least half the time.  Of course I've gotten worse it's degenerative, progressive, those words we Parkie's hate because it's the one time "progressing" isn't a good thing.  It's not like playing the guitar and progressing that's great, this not so much. 

This bi annual 704km nearly 12 hour day that I make twice a year to see my Doctor was different.  It was the first time I had a "list" of all the negative changes my body has been having.  The first time that it wasn't him asking a question to discover progression, but me knowing full well I had indeed gotten a bit worse and wasn't in denial about it.  Hate it yes, but not in denial.  My forearms have begun to feel very tight and sometimes pain or ache much like my calves, hands & feet all which have been plagued by Dystonia.  My ring finger on my right hand has started to pull in to the palm of my hand and often will twitch in that direction which is painful.  My right leg has started to have noticeable tremors when standing still.  My right foot started to tingle months ago in between my big toe & next one and up the top middle part of my foot, it now is numb all the time.  It feels like when you go to the dentist and get frozen.  My apathy without a doubt is much worse and I'm struggling with some emotional issues still like social anxiety and my new loss of identity having both my girls in school, being unable to work and home alone.

The long and short explanation of almost all of the above is the continuing gift of Dystonia.  I have most definitely come to the conclusion that although Parkinson's Sucks, so does Dystonia and it in fact can be worse as it's painful.  My forearms are Dystonic and there's a tendon in the right forearm that's significantly twisted and that's what's causing the pulling in of my ring finger.  My caves are so dystonic that although the numbness isn't a result from the brain he figures it's a direct result of the dystonic muscles one of which is likely pressing on the nerve to my right foot.  The increase tremors & stiffness are simply PD itself progressing.  So the result of all this?  Yup, you guessed it my medication alarm will be going off more often.  I'm not getting enough levodopa so I have to increase a full extra dose a day starting this morning to try and keep my dopamine levels more consistent as There's too much time in between doses,  I'm to try that for a week and then call the PD nurse for a discussion on how it's working.  If it's a drastic positive change perfect, if not I must increase my dosage of pramipexole to 3 pills three times a day rather than 2 pills.  If we make that increase it should also help with the apathy.

On a positive note.... because remember even when things are rotten there is always a bit of joy in every day it's just sometimes really hard to find.  However I've been playing the fiddle and taken up the guitar a bit again.  I can't play the guitar long it hurts my dystonic hands but the fiddle has a small neck and I can play it longer.  Since starting to play music I've been doing that at night rather than watching TV after the girls go to bed.  I've noticed after doing that for a couple of weeks that I've been getting more sleep.  Rather than my usual 3-4 hours a night I've been getting more like 5-6 consistently and sometimes even 7.  I asked him if it was a coincidence and he said absolutely not.  That I should continue to play music that there are tremendous amounts of research proving music therapy can be very beneficial in anyone but particularly neuro related sleep issues.  So if you are having trouble like probably 90% of other Parkies sleeping, maybe take up an instrument, or listen to soothing music for at least 20 minutes before bed. 

I shall end on this...  I choose not to throw a pitty party this time.  I choose to remain positive and find the joy I each day.  Our circumstances may be entirely out of our control but our attitude daily is entirely up to ourselves.  Wallowing in your negative circumstances in life whatever they may be will do nothing but make you feel worse and when you have a crap load of rotten stuff to deal with why in heavens name would you want to feel even worse?  It's ok to be pissed off don't get me wrong and I most certainly am often at the cards dealt to me, but that being said life is precious we only get one chance at it and do you want to spend it being angry or do you want to spend it joyfully?  So I shall choose to laugh at the crappy circumstances, make light of my situation because that's just how I deal and I think laughter is great medicine.  I will choose to be grateful for the medication that's available to me that allows me to live my life not without struggles but where I still am fortunate enough that most people don't "see" my symptoms or how I'm affected daily.  If it weren't for the many meds I take I would not be able to walk properly, I would often struggle to get out of bed if I could at all, I would be in severe pain 24/7 and life would be pretty bad.  So if I think of it in that respect I am indeed very lucky and as my many medication alarms go off in the run of a day on my phone I will remember to be grateful for the pills that make my life possible while rolling my eyes! 

I mean really, how lucky am I?  Two beautiful girls to "play" with everyday!
That's a lot of Joy!

If you'd like to know more about Dystonia you can view a previous post about it here: http://natashachronicles.blogspot.ca/2016/05/lets-talk-dystonia.html
Visit a Broken Body's Journey Facebook page:  www.facebook.com/brokenbodysjourney


  1. Natasha: It's surprising the impact that you have on people. Every time you post, my wife comes bursting thru the door all bubbly and enthusiastic because she got to read your thoughts today. Well, she's just a joyful person by nature, who God knowing in advance of my disease, paired me with her to make my life a little bit easier, each day. It doesn't help her out much....but, I will need to work on that. Also, you're right, our families give us the greatest joy and you need to keep holding on to that assurance, very tightly, so you both have the perfect memories, no matter what happens in the future....Praying for you!

  2. Hi Natasha - Well, your post here is positive even though you are having more difficulties, especially with physical pain. But I was thrilled to hear that playing the violin pays off, especially with better sleep. This encourages me to play more, too - which will thrill my neurologist.... I play a musical instrument from Korea (I hope the link works) so maybe we should create an Eastern-Western duet performance for WPC Kyoto. I thought you were so much fun in Portland, and so upbeat. I wish you the best going forward. BTW the snapshot of your iPhone alarm schedule is almost identical to mine! Again, I wish you the best! ... http://www.parkingsuns.com/2016/06/19/kayagum-sanjo-1st-try-1st-three-minutes/

    1. Thank you Bruce you're so sweet and I look forward to seeing you again! Loved the video, that was awesome, keep playing it! We'all start a Parkie band! Maybe we'all call it 'Shaky Strings' 😂

  3. Just discovered your blog and really enjoyed what I've read so far. My mother (and her parents) have PD.. and as I've gotten older I've noticed changes in my body that have me wondering. I'm still pretty young though. But as you've mentioned got to keep pushing forward no matter what! :) thank you!


  4. Thank you for sharing. Its informative and full of information.