Apr 27, 2015

"The way I see it, if you want the rainbow you have to put up with the rain" ~ Dolly Parton

April is nearly over now and it was Parkinson's Awareness Month.  I can honestly say that I am very "aware" of PD!  Ha! Ha!  This month was full of great video's and information shared by various foundations and PD society's and groups and I sincerely hope it helped educate many about this disease and I hope that momentum continues much past this month. 

Only fitting I suppose that I ended it off with a trip to my movement disorder neurologist with my bi annual 700km return trip.  This time I had my husband as a chauffeur which was a welcome change to a very long day of being in primarily one position driving, thankfully I was able to shift around in my seat instead which provided some relief to the stiff drive.  And thankfully I had him to listen to me be irrational and cry and tell me everything's going to be fine on the way home...

So as you can guess by that, my appointment did not go without some upset.  I have been having a lot of trouble with my right hand for quite some time now.  In fact it's one of the main reasons I'm unable to work.  Holding a pen to write and fine motor skills using my dominant hand have been a struggle.  However in the past few months I've noticed it getting much worse.  My fingers curling inward and not wanting to be in any position other than that and the pain that originally was near the base of my pinky & ring finger not only moved its way across my hand to my thumb but also is more frequent.  It's no longer happening just when trying to use the hand, it hurts all the time.  I've read enough and spoke to enough people with PD that I suspected it was Dystonia starting to happen.  Dystonia is a neurological movement disorder you can either get on it's own or as a symptom of Parkinson's Disease.  In PD it can often happen to the hand, arm, neck or foot.  Like many women I like to be right! ;-)  However this is one of the times I wish I wasn't.  But sadly my suspicions were confirmed with a diagnosis of Dystonia in that hand, why must PD have affected the dominant side of my body?  Life would be so much easier if I was either left handed or that was the side primarily affected.  In addition to the dreaded Dystonia of my hand it's clear that after just shy of a year on PD meds that my peak on times are just not cutting it.  Although the meds work well for my stiffness (once the first dose of the day gets into my system) I can often last 4 sometimes even 5 hours where the stiffness is manageable I have not been so lucky with fine motor skills.  I typically only get about 2 hours of peak time for that.  So given the fact that my peak's are not where they should be and there's too much 'off' time combined with Dystonia setting in he wants to add another medication to the mix.  This time a dopamine Agonist that he thinks may help level off my day and improve my 'on' times and could possibly help the pain and twisting of the dystonia if added to my current Levodopa regime.

To say I was happy or excited about this potential would be far from the truth.  I know this is not the end of the world but I am struggling with this new reality.  I bust my ass to try and do everything right.  I exercise (the only proven way to slow progression of Parkinson's Disease), I eat right, I seek and utilize every possible alternative therapy I can find whether it's covered in our insurance plan or not.  I have a 'care team' of doctors, specialists, naturopaths, physiotherapists, massage therapists, acupuncturists and more.  I take a sea of natural supplements to help with my PD and symptoms to avoid taking any more pharmaceuticals than I absolutely have to take.  I spend a small fortune on all these things to try my best to live well with PD.  I work very very hard to be my own health advocate and leave no stone unturned.  And yet, in this moment today it felt as though all that was for nothing.  Here I sit 11 months after treatment started and already I need another medication to manage my PD and have essentially added another disease/ailment to my repertoire.  This is not the way I planned it out in my head when I decided to say "Screw you Parkinsons" and fight this.  Don't get me wrong, I fully understand that I have a progressive degenerative neurological disease and I fully understand that perhaps adding this medication will improve my quality of life yet again like levodopa did and from there on in I will maintain where I am for years to come.  My logical brain understands all of this and that this is not the end of the world.  My emotional brain however is on a completely different track.  I would be lying if I didn't say that oddly enough I was far more upset at this news today than I was when I was told I had Parkinson's Disease.  I know someone out there is reading this thinking "she is nuts, how could this be worse?".  Well I can't really explain it.  It just felt like I worked so hard for the last year to maintain where I was and not get worse but despite all my efforts I did anyway and it feels like I failed.  I know I didn't and I know I couldn't have done anything differently other than do none of what I did and then I would likely be ALOT worse, but I am frustrated. 

So, although it is not something I typically allow myself to do I am choosing to allow myself to suffer.  If you read my last post you'll understand this statement.  "Pain is a reality, suffering is optional"  I choose day in and day out to not suffer, because that is a choice.  And tomorrow I promise to wake up despite my morning 90 year old body, wait for my meds to kick in and dust myself off and get on with it again.  Get back into "Screw You Parkinsons" fight mode and stop feeling sorry for myself.  And I assure you that's just what I will do.  But for now, just tonight I'm going to allow myself to be pissed off and to be upset.  To cry if I want to, cause after all, it's my party.  And I will do it all all while sipping a nice glass of Malbec. 
BUT.... tomorrow IS a new day and I will be fine and there will be joy in the morning's rainbow!