Dec 21, 2014

A year of reflection...farewell 2014, you will not be missed!

This has been quite a year to say the least.  Actually it's been a long year and a half because the second half of 2013 was when the journey actually started.  As we near closer to 2015 I am a different person than I was before, forever changed.  A new way of thinking, a new way of doing, a new beginning has emerged for not just myself but my family.

It was a year of shocks, realizations and soul searching.  I will never forget that day in April sitting in a Neurologists office alone 350 km's away from home when I first heard the words "I think you have Parkinson's Disease".  Although I knew my body was failing me and something was wrong that had never been something on my radar and to this day I can still feel the sensation like I was kicked in the gut and winded.  A vivid memory etched in my brain of me sitting in that room scared, shocked and yet oddly relieved that someone was finally figuring it out. 

Then in May when I was back again this time with my very supportive husband in that same building with a movement disorder neurologist who wanted to start me on a treatment plan for the disease still saying "think" or "suspected".  I remember leaving that appointment, prescriptions in hand torn up inside.  Having so much trouble getting my body to cooperate, so much frustration with simple tasks that it often would bring me to tears not understanding why.  Yet overwhelmed with a feeling that despite wanting those things to get better, not wanting the treatment to work.  Before that day in April I knew nothing about YOPD now a month later I knew far too much.  I knew that unlike MS and some other neurological conditions there was as of yet no treatments to slow progression.  I knew that it was a degenerative disease that would always get worse.   I knew a lot more about it than I wanted to and was torn with wanting my body to start cooperating again and not wanting it to so I would not have this disease...

Time went on, it was clear that I could not function in my life without my little yellow pills.  I started to get joyous windows of opportunity where I could do tasks I couldn't before.  An odd sense of gratitude mixed with fear would overcome me in the months to come.  Trying to prepare myself for what was to happen on September 19th, 2014.  The day where yet again I found myself in that same hospital 350 km's from home, alone but I thought mentally prepared for what was to come.  A confirmed diagnosis of Young Onset Parkinson's Disease.  I've spoke of before and always loved the song "Unanswered Prayers" by Garth Brooks.  I believe it's true that some things we pray for aren't answered because they shouldn't be, because there's another plan that suits us better.  I prayed hard for an answer to figure out what was wrong with me, I think there are moments where I would have wished that prayer wasn't answered.  But it was.  I then ended off my year with a pre Christmas hysterectomy and removal of my tubes which PD threw a big curve ball into the post op scenario.  I'll write about that another time. 

You know it's been a year of struggle with health issues when you visit your family physician in December and he says "you poor soul, 2014 just isn't your year is it?"  Thankfully 2015 is just around the corner though and I know it's going to be a great year despite any struggles that I may face!  There were many tears shed this year through all of this discovery, many moments of kicking and screaming and anger, many moments of feeling more alone than I ever have in my entire life.  Thankfully however there were many joyous moments and lessons learned to balance things out a bit.

I found support... in the most unlikeliest of places.  Writing this blog for nobody's purpose other than my own grew into something else.  It connected me to people all over the world who are going through and feel the same type of frustrations and emotions that I do.  Given me an opportunity to learn from and share with those people.  For those of you who read this who have PD I will include some links at the bottom of this post that you might find helpful.  I have found support in friends from days gone by that have now re-entered my life in the most amazing and beautiful way.  Friends that love and support me more than I could have ever dreamed up that lift me up on the days where I want to cry.  I would not have those people in my life the way they are now if it weren't for PD and I am grateful for that.  I have attended support group meetings where admittedly it can sometimes feel like that song from Sesame Street is playing in the background "one of these things is not like the others" as most of them have 25, 35, 45+ years on me.  However despite my anxiety about attending them were very positive experience with useful information,

I have found hope... There are amazing things happening through organizations like the Michael J Fox Foundation and others on the road to new treatments, better treatments and hopefully a cure someday. Pumps that can be attached similar to diabetes pumps to deliver more effective doses of levodopa and increase "on" times etc.  Inhalers to attempt to get it to your brain faster. As well as important steps to finding something to slow progression of the disease.  I have found some things through my Naturopathic Doctor to help me in some of these areas and I have hope that there are more ways by thinking outside the traditional 'pharma box'.

I have found a new vision... I love helping people its my passion and I truly strive to use my abilities to teach my girls to give back.  That there are always others less fortunate and we should help people out when we can and be kind.  I've raised money for various causes, shaved my head for childhood cancer, planned benefits for families struggling etc... These things all warm my heart and make it smile and I truly love doing them.  But I think my path of helping is changing and will look a bit different moving forward.  Through this blog I have connected with others facing this disease and have had the opportunity to share and spread awareness that Parkinson's is not just an old person's disease.  It may look a lot different when you have it younger, in fact when my medication is working and I'm having a good day most people would never even know I had it.  It's hard to "see" sometimes and unless you spend a lot of time with me or see me on an "off" period you couldn't really understand.  I was approached by the Parkinson's society of Canada about my riding lesson's for therapy and they posted an article in their National epost.  I was thrilled to spread the word about the benefits of riding which has helped me tremendously and I hope that it has caught the attention of others with PD to give it a try.  The link to that publication can be found here:
I was also overwhelmed when an organization that's at the forefront of finding a cure wanted to use a portion of my blog to spread awareness on YOPD.  The Michael J Fox Foundation does amazing work and the response from their article and people it's connected me with has been invaluable.  Oh what I would do to get to sit down and have a coffee with Michael.  His books, his attitude, his determination are all very inspirational. 
I may not have gotten to choose whether or not I have PD, and to be honest who in the world would.  However I can choose to try and make something positive come from it.  To try and help others struggling now and in the future.  To do my best to advocate for what is life changing and a lifelong trial.  It helps keep my positivity in check so I get as much from it as others may receive.  The messages I've received from all over have been inspirational to me and I am grateful for those that reach out to share their similar stories.

And I found love...  Unconditional amazing love particularly from my husband.  Who throughout this has been there to comfort me, tell me it'll be ok and that he chose me in sickness and in health.  I'm sure he has his own moments of fear, but he always makes me feel loved and comforted.  That he will always be by my side.  He's also terrible to torment me and make me laugh when my tremor is bad or I'm hunched over before my yellow friends kick in.  Playful digs about a bad situation to make me laugh.  Cause you might as well laugh as cry right?  The song 'You & Me' sums it up perfectly.  I first heard it on Ellen and it was like they were singing it about us!  And I found love from my children and worry from them that both makes me feel awful but loved at the same time.  Love from family and friends who come to my rescue when needed.  There is a lot of love and I am full of joy for it.

All and all it has been a year that I'll happily see go away.  However the struggles will not depart as the bells ring this New years, but that's ok.  It'll regardless be a fresh start and I pray a positive outlook moving forward.  I will strive to stay positive, to keep as active as I can like I have been to keep the disease at bay.  I will continue to find the joy among the fear.  I will continue to try and help others and to spread awareness.  I will keep, keeping on because I want to and despite the struggles I am blessed I am lucky and I have Joy in this Journey...

Here are some links for those of you with PD that might interest you:
I had the pleasure of connecting with this lady through emails  She's wonderful check out her blog!

Sonia is a family physician that had to give up her practice with YOPD.  Life works in mysterious ways and oddly enough my family doctor and her are friends.  She puts out some great information and is very sweet.

Another I've had the pleasure of connecting with

And this man is the chair of the YOPD support group in the Maritimes.  We had a great chat, he's full of great information and remains positive in his own journey.