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Steve’s Blog – July 9 –  Parkinsons is a mean old man – Creston to Cranbrook 

Sometimes Parkinsons is a person.

A mean old man, with hostile intentions. He is petulant, tireless and single-minded.  In truth, usually I pay him no attention, and he leaves me alone, though I do see him hassling my friends now and again. He wants in – into my house, my thoughts, my consciousness. I don’t know why, but sometimes I do give him access; maybe only to prove to him that he can’t harm me, that I am too strong for him, that he has no future with me. I don’t think he cares – in is in. He is happy to sit in a chair, in the dark,   and wait.  Of course I want him out.  Sometimes I yell at him, throw things, or refuse to acknowledge him until he is gone, but he stays seated, watching me, and when I am most piqued,  he smiles.

But I am not defenceless. Sometimes I look right at him, turn on the lights, make him uncomfortable, and challenge him directly. I make him show his worst and I show him my best. I mean my absolute best. When I do that, frankly, I have no idea if he is still sitting alone in his sad little chair or not; I’m not even there. He can wait for me. I’ll bet you he’s not smiling then, but I sure am.   

I really challenged the old man today. I don’t know what got into me, but halfway through the day I just felt like cranking. Though the ride had a vertical climb of about 900m, there was a decent tailwind that helped. I saw that my avg speed midway was about 25 km/hr, and it felt like a 30 km/hr day. It’s not easy to swing an average that far when I’m already over 50km into the ride, but I set that as my goal and I started chipping. I would hold 35km for 2-3 minutes but it barely made a dent. So I dug deeper 36, 39, 42, 44. I kept challenging myself and, for whatever reason, today I could hold it. There is a tailwind, but not enough to explain this rush of energy. There is a 45 km time trial on this route, and I captured the 12th best time on Strava – ever.  And it’s not just me, Jim is moving faster too; much faster.  I’ll bet that he is going to kill it in the prairies. 

Maybe we are just getting acclimatized to the exercise, maybe our day off yesterday was unusually restorative, or maybe we are just getting stronger. 

Whatever it is, it feels great.

I’ll pass on some advice that I received and adopted when it comes to dealing with health adversity later in life: don’t let the old man in.

Tune into CBC ‘Fresh Air’ tomorrow (Sunday) morning at 8:30 am est.

4 Responses

  1. I am so inspired by your group and what you are achieving. I’m a fellow Vancouver Islander and I have a father with Parkinson’s who is declining rapidly. It’s hard to watch. You, however, have changed the way I see the disease.
    Some combination of a New Years Resolution and a coping mechanism led me to decide to do my first triathlon. I’ve been training for 6 months and the race is next Sunday in Victoria. After seeing your campaign, I started my own GoFundMe which I will donate to SpinningWheels. https://gofund.me/b674b4d3

    Best of luck in the Rockies!

    1. Hi Graham! Thanks so much for sharing your story with us. Impressive! We hope that the triathlon goes well and we hope that you and your father have some good days ahead. Please let us know how the triathlon went. Also, thanks so much for thinking of us with your GoFundMe initiative. We are very touched.

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Why We Are Doing it

You have probably heard of Parkinson’s Disease. You may even know people who suffer from it.  Get used to it, as Parkinson’s Disease is the world’s fastest growing neurological condition, set to double in number by 2040.

Parkinson’s Disease occurs when the brain’s dopamine-producing cells die prematurely. Dopamine is a neurotransmitter necessary for many functions of the brain and body, including muscular control, and its loss affects all forms of movement and balance, as well as non-motor functions such as memory, concentration and motivation.  Think of dopamine as the electricity in an electric car: without it, the lights dim and the wheels stop spinning.

There is currently no cure, no bio-markers to aid detection, and little is known about how it is triggered, except that Canadians are disproportionately afflicted

Most people living with Parkinson’s reduce or even discontinue regular intensive physical activity after their Parkinson’s diagnosis.  Why?  Their actual skills and abilities do not suddenly evaporate on the date of their diagnosis, though their mental fortitude often does.  As a result, many abandon the very restorative health practices, such as regular exercise, when they are needed the most.  For people with Parkinson’s, intensive exercise can boost energy, sharpen the mind, elevate spirits and keep the body mobile.  Studies indicate that intense exercise can help train the Parkinson’s afflicted brain to use dopamine more efficiently and be able to do more with less.

Let’s use the dopamine we have to build the lives we want.

What are We Doing

Canada is a big country.  It is home to over 100,000 people living with Parkinson’s disease, 9 in 10 of which suffer in silence, isolation, or without the support of a knowledgeable organization or community.  Starting in June 2022, we aim to cross our big country by bicycle to meet as many of these people as possible to personally deliver this message: get moving to stay moving.  

We start In Victoria, British Columbia and ride east through every Canadian province, and hundreds of cities and towns along the way.  Our route is approximately 8,000 km, and we expect to average 125 km a day, six days a week for approximately three months.  Our Spinning Wheels Tour team will include two riders with Parkinson’s Disease, as well as two ride-along supporters to keep things moving.  Along the way, we will be meeting with people whose lives are touched by Parkinson’s, and encourage them to get moving with us, get engaged in support communities, and to set up their own group athletics.

We are not athletes, just people with the resolve to do what it takes to live well with this disease, and to encourage others..  

Along the way, we hope to hear these words, “If they can do it, I can too.”