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Steve’s Blog – Sept 5 – what Parkinson’s looks like on a cycling trip – Edmunston NB to
Clearview NB

We awoke this morning to heart-stopping cold. It was 2c at 7:00am, and felt colder. Plus we
were on the wrong end of a time zone change, so our morning prep went slow. We rode 116km,
with the return of hills. Our evening is spent in the company of a succession of visitors to our RV
Park, searching for ways to offer us comfort – funds, firewood, homemade pickles, fresh
tomatoes. The famous friendliness of New Brunswickers remains true.
So, with all this talk about cycling success I imagine that it is easy to conclude that PD is not
holding us back. It is. Here are some observations:
Mike undergoes an astounding transformation each morning and evening. He is often up first,
due to PD induced sleeplessness. Getting out of bed is cumbersome and laborious, taking time,
patience and physics. Once up, changing clothes is typically too difficult with fingers that won’t
pinch and arms that won’t bend. Often, Mike will shuffle walk, knees straight and toes askew,
taking 10-12 micro steps compared to a normal stride for a man his size. He will often sit down
at the kitchen table to work on his computer – updating the website content or working on a
video project. Again, hand dexterity is challenging, like trying to operate the computer mouse
through a pillow. His voice is faint and facial gestures frozen. He takes his first dose of

medication at 7:00am, and then roughly every two hours thereafter, but the effects can take
more than an hour to kick in; maybe two. But when it does, the most fascinating transformation
occurs. Like Houdini wriggling out of his shackles and restraints, the real Mike suddenly
appears.
Today is a riding day for the real Mike. He gathers his things, throws a leg over his gravel bike
and pushes off. Today he rides 80 km into a headwind. He likes to be in front, especially for
downhills. His cannonball-sized calves tighten and release with each pedal stroke, and his grin
brightens as the speed climbs. The real Mike is flying.
Eventually this ends. First comes fatigue – sloppy posture and steering problems. Then his
energy drops. Sometimes this will trigger anxiety. The real Mike knows what’s coming. Against
his will and wishes, the real Mike slowly yields to restraints and shackles until, once again, he is
stiff and corpse-like, though tonight the constrictions are pulled a little tighter as penance for his
frivolities of the day.
Mike goes through this every day. We each have our own “behind the scenes” story that we
don’t like to share, but I thank Mike for letting me detail my observations.
We thought you should know.

2 Responses

  1. You are in the right company for empathy and understanding, big Man. I can’t wait to see you all again in PEI. See you all soon.

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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.”