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Steve’s catch up blog

We are now at Day 4 and I have been shirking my blog writing duties. Our evenings have been filled with organizational tasks to get things going in the right direction, including all the mundane tasks (shopping, laundry, meals, scissor-jacking the RV).

So here goes the (hopefully) one and only catch-up blog:

June 25 – Victoria – and we’re off

You couldn’t ask for a better send off. (Well, you could ask, but who?)

We started at CloverPoint Park, a peninsula of land pointing proudly to the snow capped Olympic mountain range to the south. With warm weather and a cloudless blue sky, the turn out was high, with about 50 people coming and going. We enjoyed  donated food and coffee; gorgeous hand-made signs created by my talented niece, Lauren; Media coverage from the Victoria Times (replete with hilarious misquotes) and, a drone to take elevated shots of nothing in particular.

The event was hosted by the Victoria-based Parkinson’s Wellness Project. Introductions were made, speeches tolerated, and Parkies herded, and finally we were off. A dozen riders joined us at the start of the 36km ride to the ferry dock, breaking off one by one until just our adopted group leader Andy remained. (Andy is an excellent cyclist, and participates in a small club of parkie cyclists. He is interested in helming a Rigid Rider chapter.)

June 26 – Vancouver

Each time we set up camp, we place a gorgeous Spinning Wheels Tour sandwich board sign (created by Angelo) at the foot of our site. This sandwich board, our RV decals and Lauren’s ebullient signs always garner attention and start conversations. So we learn early that there is interest in what we are doing. This is confirmed with two morning requests for live radio interviews (CKNW Vancouver- Raji Sohal show, and Global network’s national broadcast The Roy Green show), following

which we meet with Larry Gifford, international PD advocate, co-founder of the PD Avengers, and, it turns out, great guy. Larry came to our campsite, spoke for hours, and recorded one of of his famous podcasts. We bid a sad farewell to Lori, and then head into town to meet Jeff Kelly, son of Rigid Rider David Kelly, who is completing a masters-level study of the effect on Parkinsons of a device worn behind the ear to help improve limbic control and, thereby stability and gait. This guy is marvellous. His dream is to create a product that will have immediate symptom relief. I hope that he gets his wish.

June 27 – Vancouver to west of Chilliwack

This day was about cycling and pain.

Our original plan was for 121km. Long but sane, especially given the extreme heat. Lots of time spent lost, followed by the need to move our end spot 20km further, and it turned into a 165 km day. But the humid heat of the day felt like mid-30s, making this quite an endurance event. Jim and I do a good job of sticking relatively close to each other, but the heat became unmanageable for Jim. A funny story arose from it, but it is Jim’s to tell.

At one point we got totally lost and wound up in a Federal psychiatric holding facility. A guard told us to leave, telling us we’re had no business being there. We proved him wrong by then riding against traffic down a busy highway shoulder (bikes permitted) to get to the off ramp we needed. And we won’t mention the closed road due to landslides from a collapsed  mine, which lead to some creative alternative route planning. Road restrictions are way more interesting in BC.

We stopped to give another live radio interview  en route. Two more radio interviews are booked for this week, including one in Calgary on Wednesday morning 5:20 MST (can’t recall particulars), and one on Thursday at 8:20 EST with Toronto’s 640 am

June 28 – West of Chilliwack to Sunshine Valley

To begin at the end, Sunshine Valley is cold and rainy. 

Today is a lighter cycling day: 65 m and a very strong wind. Highlights of the day include a stop in Hope BC to see their Rambo carving (apparently, part of the movie was filmed there), and a 16 km sustained uphill climb. Thanks to Fulton, James and the coffee crew for helping to get me ready for these hills.

It is dawning on me that this will be what my life will be like for the next few months. Each day brings something new and interesting, cycling and Parkinson’s are daily themes, but life in an RV is becoming the real story.

Those in Toronto, remember to tune in to 640 AM Thursday at 8:20 am.

One Response

  1. Hey guys. I watched the video with Jim holding a bag of ice to his head and holding his thigh. I feel your pain. Bruce and I had the advantage of doing some test runs to figure out what worked and what to be prepared for. My recollection is that the first significant challenge for me was the heat through Oysoyoos. It nearly did me in and it made the importance of planning to bring more water with you than you might think. Water is as key to avoiding muscle cramps as potassium is, in my opinion. I don’t know if you’ve used the recumbents much yet but if you are, you might want to wear running pants instead of traditional bike shorts. You don’t have to worry about getting saddle sore and not having the shamois will give your twigs and berries some needed breathing room (cleaned that suggestion up for your reading audience). Covering your legs is critical on long recumbent rides. No amount of sunscreen can compensate for proper coverings. On a test rude that Bruce and I did through Nfld resulted in some pretty severe sunburns on our upper thighs and knees.

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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.”