It doesn’t seem possible that ten years has passed since I first heard the words ‘You have Parkinson’s’. In some ways it feels as though little time has passed that it was a mere few months ago. In other ways it feels as though several lifetimes have passed.
A lot has happened in ten years: The Amazing Race Canada / the writing and publication of Perseverance / I have traveled the world telling my story / I founded a Wellness Centre for Parkinson’s / children have become adults / grand babies(!) / and I have learned a lot about living in general and with Parkinson’s specifically. A few of those lessons are as follows:
This is way harder / easier than I had feared.
It is such a long journey. It’s been a long time already and it’s likely never to end. I have often said that this is the most difficult aspect of PD for me – it’s tenacious, it never ends. It never gives up. Day after day it returns to harass my life. It is the first thing I say hello to in the morning, the last thing I say goodnight to and it’s my near constant companion throughout each day. Rarely am I free from the conscious knowledge of PD in my life.
But then it’s been way easier than I had feared. In many ways I remain incredibly healthy compared to some, if not most. After all, I just bought a new pair of running shoes…nuff said!
I hate PD…still. Yet it remains my Best Friend – Whom I Hate (see my book Perseverance). While I hate that PD never leaves me alone I have learned that I too must never leave it alone. I need to hold it close, learn its ways, and diligently fight back against it.
I have come to believe that there’s no reason that we can’t “fix” this thing but I don’t listen too closely to those who say they’ll cure me.
The multiple vaccines that have been developed for Covid proves to us that the scientific community can be far more productive than previously believed. If the world felt our urgency in finding treatments I have no doubt that in short order many of us would be back to more normal lives, free of many of the ravages of PD. However, until we can produce this urgency in our government bodies, pharmaceuticals and science in general I fear we will continue to walk with our best friend – whom we hate.
The #1 lesson I’ve learned over the past 10 years is this – It’s All About Me. Contrary to what Mom taught us I believe this conversation is all about me. Now let me clarify a bit for you that when I say ‘me’ what I really mean is ‘we’. When I say, ‘we’, I really mean ‘us’, and when I say ‘us’ I really mean ‘you’. Me, We, Us, You, the people living with Parkinson’s are the centre of this conversation, the centre of the Parkinson’s universe. It is not about the next cure – it’s about me. It’s not about the next breakthrough – it’s about me. It’s not about the next great scientific marvel – it’s about me. And…when I say me I really mean we and when I say we I really mean us and when I say us I really mean you.
I have come to the conclusion that we will likely do little in my lifetime to end Parkinson’s, thus, the work I do to this end is for those coming after me. This conclusion then begs the question ‘what about me?’. What about those alive who may never see effective new treatments? What is being done to care for those living with the disease today?
I believe there is a critical question that each of us needs to ask each time we are presented with some new “thing” and that is “what’s in it for me?”. As self centred a question as it sounds it really is the essential question. If there’s nothing in it for you then why is it so important? If it’s not giving you what you need today to survive with Parkinson’s, to live better with Parkinson’s, if not cure Parkinson’s, then what’s the point?
Caring for ourselves, looking after our personal wellbeing, as a first priority, is central to our collective success and ultimate defeat of PD. I have come to believe that the adage, ‘if you don’t have your health you have nothing at all’ is key to our efforts.
Ten years in and a lifetime to go I’ve come to see that it really is all about me, we, us…You!
Live Your Best!
This April 2021 will mark five years since we first launched U-Turn Parkinson’s Wellness Centre in Winnipeg Canada. The mission of U-TurnPD is to empower people living with Parkinson’s in their pursuit of wellness. We offer a variety of programs from Rock Steady Boxing to Singing Groups to Support Groups and so much more.
On April 24th we will be hosting our first annual Food Fare Parade for Parkinson’s. I would invite you to come walk, wheel or stroll with us virtually by submitting a picture. Then join us in strengthening our community by becoming one of the 200 or by simply making a donation. Get all the information on our birthday celebration at www.uturnpd.org.
Live Your Best!
Coffee w/ Tim – Conversations on Life & Parkinson’s
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