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!


Apr 3, 2015

"Pain is a reality, suffering is optional"

Today marks a year since I first heard those scary six words.  "I think you have Parkinson's Disease".  I still remember it like a movie in my head, as if I was standing in the corner of the room watching the appointment unfold.  It had already been 9 months at that point of having an uncooperative body and endless tests and appointments with no answers.  I remember the feeling waiting for my name to be called at this neurologists office that I had travelled 350km to see.  I recall the feeling of helplessness and the fear that it would be yet another dead end.  The worry that I'd be in limbo forever with no end in sight to get better.  But most of all I remember the end of that appointment as I sat nervously waiting for yet another experts take on things.  And I remember the feeling as if I had just been kicked in the gut with the breath knocked out of me when he said those six words.  Six words that would have never entered my thought process.  Two words, Parkinson's Disease, that I knew virtually nothing about.  Two words that sounded absolutely terrifying.  Two words that would change my life, our families life forever.  I remember saying "thank you for not saying I'm crazy" being about the only thing I could get out and his reassurance that no I was not that something was very wrong and how he would have me back ASAP to see his colleague a movement disorder neurologist to confirm his suspicions.  Beyond that, I remember desperately trying to hold back tears and being in a fog as I walked out of that appointment all by myself and headed to my car for the 350 km drive home.  A long drive with a lot of time ahead of me to try and process this news.  With that came with some punching of the steering wheel, some anger filled thoughts of 'why me?' and more tears than I had shed in a very long time.

What I could not have known that day in the midst of all the fear and confusion was just how ok everything would be.  How much love & support I would have.  I could not have known I'd have an entire community of amazing people in the PD world that would soon comfort me and touch my life in ways I could never put to words.  What I could not have known was that life with a diagnosis and treatment would be improved more than I could have ever imagined.  That many of my issues would be controlled so well I could get back to living life again.  What I could not have known was that despite the moments of fear that I still have about the future, that wonderful things were still going to present themselves in my life.  What I could not have known that day was that this wasn't the end of the world, nor the end of the road for me;  but simply a new chapter, a new road to travel and a process to figure out what was next.

In 365 days I have become about as much of an expert as possible about PD and a lot has changed.  365 days later I can honestly say that there is just as much good and just as much joy if not more in my life than there was before I heard those six scary words.  I wish I had known that would happen on that fearful day, but I guess that's just not the way life works.

I just returned from a conference in Halifax which was fantastic.  It was put on by the Parkinson's Society Maritime Region and provided a wealth of knowledge and a room with 200 other people who either have PD or help care for someone with PD.  And you know what stood out the most about this room full of people with this disease as I looked around?  For the majority of them, likely about 95% in fact; if you were to walk into that room you would never know they had PD, particularly if you weren't 'looking for signs'.  This was very encouraging to see and experience not to mention comforting to have so many others to share experiences with and understand each other.  A lady by the name of Eleanor Beaton who is a professional women's life coach opened the conference.  She spoke about human nature and the stages you have to go through to deal with a catalytic event in your life.  (Parkinson's diagnosis, divorce, loss etc...) and many things she spoke of touched home with me.  But the thing that struck me the most was when she said "Pain is a reality, suffering is optional".  How human nature is to try and make pain go away faster, it's uncomfortable and it hurts and nobody wants to feel it.  However it's necessary to feel pain from a catalytic event in order to go through a process of reformation and in turn emerge on the other side.  However to suffer is completely optional.  To dwell on the circumstances and allow yourself to be miserable about it is a choice you are making that causes you to suffer.  I cannot agree more.  In the last year I have struggled with the changes forced on my life because of Parkinsons.  However, I also think I've worked really hard to deal with the pain my diagnosis brought, as well as the pain from loss of career, loss of friendship and many other emotional pains on top of the physical ones.  However through that process I have also worked hard at a refusal to allow myself to suffer.  I have made the decision to face my future head on and remain optimistic.  To do what I need to do to live well with PD.  It's not always easy and I still feel the pain at times but suffering won't make anything better.  So it's as simple as that... I choose not to suffer...

So, as this year comes to a close I'm grateful for the opportunities to advocate for PD and to raise awareness that PD is not just for older people.  I'm honored that I was able to be a guest blogger with the Michael J Fox Foundation, share my story of equine therapy with the Canadian Parkinson's Society and connect with other people with PD all over the world through this blog.  And now, I'm onto the next chapter of my new life with Parkinson's.  I am volunteering my time with the executive committee of the PEI Chapter of the PD Society and I have just been elected as a member of the board of directors for the PD Society Maritime Region.  I'm also working with the PD Society of Canada as am Ambassador with their National Advocacy Network.  All things that I can do at my own pace and ability.  My loss of identity I have suffered with from having to give up my career has lessoned.  I now have hope that I will be able to volunteer my past professional experience to have both an impact in the PD community as well as feel like I'm still a contributing member to society despite the fact that I'm unable to work.  This is a very empowering and freeing feeling and I look forward to these opportunities that have presented themselves to me.  Had I chosen to suffer through this experience and like many other people with YOPD remained in the Parkinson's closet, I would not be able to do these things.  Had I chosen to suffer I have no doubt I would be in a very poor emotional state.  So for all these reasons I am grateful and I have found joy in this past year and look forward to finding more as time goes on.

If you have Parkinson's Disease don't be afraid, don't withdraw, seek support.  It might be scary at first but it will have a positive impact on living your life well with PD.  Here are some resources if you're in Canada and particular in the Maritimes.  If you have YOPD there is a monthly video/teleconference that happens which you can participate from the comfort of your home.  You can remain anonymous or come out of the PD closet, which I encourage you to do.  There is valuable information shared and often guest speakers in these monthly calls.  Feel free to contact me if you'd like, don't do it alone there is strength in numbers!

Previous post 'Parkinson's Disease, not just for old people':  http://natashachronicles.blogspot.ca/2015/02/parkinsons-diseasenot-just-for-old.html

Parkinson's Society Maritime Region supports:

Parkinson's Society of Canada:

Michael J Fox Foundation offers webinars, guest bloggers and a wealth of knowledge on a daily basis:

Parkinson's Disease Foundation also has online learning tools & great information:

And last but not least.  The World Parkinson Coalition has amazing information and ressources.  If you are able to attend the 2016 WPC conference in Portland Oregon I know it's going to be amazing! 

There are many other avenue's, other bloggers that you can laugh and cry with.  So many opportunities to connect with others.  If you'd like more ideas, other blogger addresses, information or simply someone to chat with please email me through this site. 
You CAN live well with Parkinson's Disease whether you are 37 with small children like myself or much older.

April is Parkinson's Awareness Month.  Donate, spread the word,
find a cure!
If you're able, please join my Parkinsons SuperWalk team, create a team of your own or make a much needed pledge.  http://donate.parkinson.ca/site/TR/SuperWalk2015/MR_superwalk?team_id=2774&pg=team&fr_id=1418