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Parkinson’s, Fear and the Lion’s Gate

It was a day spent re-organizing the RV, doing interviews and hosting Larry Gifford at our campsite. All the while, Vancouver’s Lion’s Gate Bridge loomed behind us. We drove over it to get to our campground. When we crossed, I was uncomfortable with the height of the bridge, the height of siting up in the Winnebago and my absolute fear of heights. It played on my mind throughout the day when I found out that the route would begin by riding over said bridge.

The night went well, I was able to grab 3 to 4 hours of that deep Parkinson sleep, you know the type where one moment your body is dancing on it’s own and then your body stops moving as your muscles seize and cramp.

I awoke at 5:30 am and sprang from bed with the anticipation of my fifteen-year-old self heading to school on a Monday morning. I rushed the 2-and-a-half-foot distance to the washroom in 27 shuffling steps. Apparently, my body was telling me it was Go time!

We joked around and had a breakfast of coffee, oatmeal and some smoothie concoction prepared by Jim. I heard the traffic on the bridge but refused to look at it. This was my day and I was not going to fail.

I was not intending to cover the 150 km that Jim and Steve were going to ride. We decided on a spot where Darlene and Mike #3 would pick me up in our RV named Wanda. A nice ride of about 36 km.

Steve and Jim finished some stretching while I pulled socks on over my curled, dystonia affected toes.

We were finally ready to roll, well almost, I still needed water, meds, sunscreen, my phone and to go to the bathroom one last time. Our 6:30 start was only off by 30 minutes, which is pretty good for me. With Steve in his usual spot leading and Jim next, I brought up the rear. Whether its cycling or a horse costume, I know my role.

As luck would have it, there was a ramp for cyclists and pedestrians that took us right up to the start of the bridge. No time to back out, no time to get the body working and less stiff, no time to call my mother. Steve was probably halfway across the Lion’s Gate before I was even on it.

I slipped into a low gear, put my head down and rode. I got into a rhythm. The bike lanes over the bridge are one way. We climbed. Jim started to pull away. I quickened my pace, settling into a chant of, “catch Jim, catch Jim”.

I ignored the ground and then the water as I recited, “catch Jim, catch Jim”. I was gaining. “catch Jim, catch Jim”. I was almost three quarters of the way up. “catch Jim, catch Jim”. I was doing it, conquering my fear, what was I so worried about. I believe we can tend to overthink and stress ourselves out which does not help our Parkinson’s.

“RING, RING”, “EXCUSE ME!”, “ON YOUR LEFT!”

Reality returned. I veered to the right. The 4-inch gap at the bottom of the rail became 4 feet. I had to grab the top of the railing, which at other times might be about my chest height with me on my bike, but now it seemed I was reaching down to my knees almost dangling from the bridge. So it seemed. I did some kind of funky chicken dance to get my feet out of my pedals. I was off my bike and freaked out but I had eluded death and the fall of a thousand kilometers to the watery depths below. You may recall me mentioning that I don’t like heights. I was shaken. I was shaking. Keeping calm and rational, I hoped with all my being that my shaking was not at the right frequency to bring the whole bridge down. I stood and tried to calm my nerves. A city buss rumbled by.

Not wanting to end in defeat on the bridge. I carefully stretched my leg over my bike seat. Another cyclist passed. I clipped in my left foot. I gathered my strength and with a mighty shove, I put all my power into an uphill push to get over this bridge. Unfortunately, all the power I could muster had about the strength of the last three spaghetti noodles, soaking in the brackish water at the end of lunch in a cafeteria. I went nowhere. I got off my bike again and shook some more.

Jim, having had the cyclist go past him, thought that it may have startled me. He turned and looked at me and knew he was right. Steve, well he was no where to be seen on our side of the bridge. Jim returned to me and took my bike and walked it to the top. I proceeded up again, visibly shaking, with shuffling short steps in my cleated cycling shoes.

By the crest of the bridge, Steve had returned to us. Between Steve and Jim, they were able to extract me from the Lion’s Gate bridge without a call to any first responders.

Once on solid ground and with Steve already gone again, I advised Jim that I was going to return to the RV. I had already held them up and they still had 148 km to travel today. Jim agreed although I know both Jim and Steve would forgo their task as neither of them are comfortable abandoning riders on the road.

I convinced Jim I would be OK and off he road. I then sat down to calm my shaking body and freaked out mind. I sat for 15 minutes, assessed the situation and sat for 15 more. There was no convincing myself that I could walk back, let alone ride across. So I texted the cavalry and was met with silence. Uh oh.

OK, Mike #3 and Darlene were just packing up the RV. They were not long in picking me up at the Stanley Park Visitors Centre. They loaded on my bike, and I hugged them both.

Everyone has fears and phobias that we deal with. Some can be debilitating. Parkinson’s seems to have a multiplying factor for things like fear, doubt and indecision. Today I got freaked out and that bothers me. It’s not the first time and I am sure it won’t be the last. In my head I was done for the day. I’m still a little freaked. Truthful and rationally, I was in no danger, and I was not alone.

My whole ride experience today as displayed on my phone: 2.1 km traveled, 88m climbed and it took .11 hrs.

Will I get back on my bike tomorrow? Probably.

But first I am going to the store and buy a new phone because I know without a doubt that I rode 40 KM, climbed 6KM and it took the better part of the day.

And I did cross the Lion’s Gate Bridge!

6 Responses

  1. Way to go! You guys are awesome! Facing your fears is very empowering. You can do it. Get back on the bike tomorrow and keep going.

  2. It’s definitely an intimidating bridge for sure. Having someone pass you makes it even worse. I can’t imagine what it would be like with a fear of heights as well.
    May you have some enjoyable spinning days ahead!

  3. That was an awesome story of your experience. Sharing your moments with everyone was even braver.

    Enjoy your journey

    Norm.

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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.”