Steve’s Blog – Aug 21 – good bad – Mississauga to Port Hope

There is a lot about this day that I will cherish and others that I would sooner forget.
We started this day with a cement-gray sky that looked ready to pop. That was how I felt. I had
spent just long enough at home with Lori, my family and my boys to be comfortable, but not long
enough to be settled. I felt rushed as I hurried to Mississauga with Lori. We are met there with
friends of ours and of Tamara’s and Laura’s – two of the principles of Passion For Parkinsons.
Even seeing these bright faces didn’t immediately cheer me up. I was sad to be leaving home.
To add to this, some long-simmering personal frustration between teammates was poised to
surface, adding dread to ennui.
The route today was familiar, having ridden it many times before. Our contingent begins to
shed as we near the centre of Toronto, leaving just Li, who we escort to Union Station, and
Eugene, who remains with us to the East edge of Toronto. Once alone, we take some time to
talk as a group. The discussion is productive and necessary, though it does leave welts. This is
certainly just the start of a process, not the end. But a spirit of kindness and recovery pervades.
This is a good time to mention something obvious that still surprises me and others –
Parkinson’s changes your brain chemistry, and with it, aspects of your personality. Dopamine
and my medications seem to have a hand in so many brain functions – focus and attention,
sense of reward and joy, and emotions of every stripe. It makes you feel like a kid again, but in
the cruel sense – a rush of strange impulses, exaggerated emotions or lethargy that ebbs and
flows without notice. It can be hard to fit this into my day, and act like everything is normal. In
truth, there is no more normal.
We had a long ride today – 150 km. Sometimes you can feel pushed along by support from
others, sometimes pulled by anticipation. Today is the latter. I long to see my old friends Peter
and Louise, two exceptional people that I see too infrequently. When we finally crawl up their
long driveway – weary from the ride and the challenges of the day – and I feel their warm
embrace, I am happy again. Deeply happy.
Count for this day: friends 1/ Parkinson’s zero.

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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.”