Rider Diary
Tune in daily for the riders’ thoughts and inspirations for each day of the long ride across the country!
Day 59
This summer has been full of adventures for me. From May to September, I cycled a distance of over 9,500 km on a mission to raise awareness of parkinson’s disease and raise funds for research and programs. I visited hundreds of towns and cities in the US and Canada, climbed mountains and crossed rivers, and talked with so many people of different ages and backgrounds. To say that this trip transformed my body and my view of life is an understatement.
Every day, I only needed to focus on one thing: to ride my bike forward, but I got so much out of this simple task. The ride may start on bumpy gravel. You may encounter muddy and sandy segments that are not rideable at first glance. Sometimes, the road becomes narrow with potholes and cracks. But the road is long, and you can always count on something beautiful around the corner. As you travel further, confidence, skills, and endurance grow in you, you start to appreciate the beautiful red leaves along the bumpy roads, seeing turkeys and chipmunks running on trails makes you laugh, and you wave and smile to people passing by, spreading the happiness. The wind, hills, and rain do not bother you as much because you see beauty in all conditions and accept them as part of a ride.
I used to think that hope is like candle flame. It flares up when positivity is around and there is a further to be seen. And it dims down when bad things push me into darkness. But now I view it differently. Hope is like wildflowers. It is alive, it grows, it spreads, and it paints the field into something vibrant and colorful. Its root grasps deep down into the ground, nourishing the land with resilience and strength. Seeing people lightened up after a conversation gives us hope. Riding with a group of over 80 cyclists gives us hope. Celebrating living well with the disease with communities gives us hope. Our hope is growing and spreading across the country like wildflowers.
Thank you for showing up and thank you for being part of our story this summer.
The Spinning Wheels Relay kicked off on July 27th when the Eastern team enjoyed their fish and chips in the rain at Deer Lake, Newfoundland, and the Western team dipped their tires at Pacific Ocean at Victoria, British Columbia. On August 30th, 6 explorers flew in Whitehorse, Yukon, approaching the north pole on two wheels towards the Arctic Ocean.
After thousands of kilometers, breathtaking landscapes, falls on gravel roads, sleepless nights in tents, countless encounters, tears, and laughters, three teams finally converged at Collingwood, Ontario on September 17th. From Collingwood, we rode as one team, cycling towards our final destination, Ottawa. We will gear down at Ottawa on September 28th and celebrate with our community. (Come join us at Ottawa, sign up here https://www.canadahelps.org/en/charities/living-better-with-parkinsons/events/spinning-wheels-finale-in-ottawa/)
For the past three weeks, over 80 cyclists joined us on the rides, and over ten reception events were organized to welcome us by local parkinson groups.
“Thank you for doing this for us!” A lady said to me in tears when we arrived at Gaitway neurophysio in Hamilton. “Parkinson brings me community, sense of belonging, and active lifestyle. I come here three times a week. These people have become my best friends.”
“You are so inspiring. I’m not able to ride a bike, but I’m going to walk in my neighborhood.” An 80-year-old lady smiled to us, leaning towards her walking stick. She is a member of Erin’s exercise group in Kingston.
“My friends are still talking about the stories you shared. We are really lucky that we are part of this wonderful community.” We stayed at Virginia and Tom’s place in Cornwall, and they invited 50 friends over to celebrate. When we arrived at Hamilton, this lovely couple joined us for a group ride.
“Yesterday was one of the most inspiring things I have ever been a part of, so again-thank you, and the rest of the spinning wheels team for courage and inspiration.” This is one of the emails we received after our ride from Hamilton to Mississauga. The day started with a successful group ride. Over 80 riders showed up at the starting point, and more riders merged into our stream of cyclists along the way. In the afternoon, Passion for Parkinson hosted the riders and their family and friends with an amazing BBQ event.
In Collingwood, Catherine and her nonprofit Living Better with parkinson’s hosted a reception for us. “We need to share these stories. More people need to hear them.” After hearing our stories, two ladies said they would cycle together with us on next year’s relay .
“People like you give me reason and motivation to do this work.” Liana is a professor at Trenton University teaching Nero-psychology and movement disorder. She and her students lead weekly exercise classes for people with parkinson’s. These classes not only greatly help people with parkinson’s get moving but also greatly help students gain knowledge beyond textbooks, from lived experiences, and spending time with patients.
These are just a few of many encounters we had. Every day, heart-warming parkinson stories are told by us and by the people we meet. Having the disease is not something to be ashamed of, we can joke about each other’s symptoms and we can decide to live better with the disease. As we approach the end of this year’s relay, we feel more and more confident that the parkinson’s community is resilient and resourceful.
We invite you to celebrate life with parkinson’s with us.
North Team
September 5 and 6 – Feelin’ Groovy
Kicking down the cobblestone
Lookin’ for fun and feelin’ groovy.”
The Paris to Robaix is an annual cycling road race currently in its 121st year. It is best known for the danger and uncertainty created by the cobblestone surface along much of the route. Riders must contend with any number of challenges and obstacles occasioned by the rough surface, including rain wind and countless other variables. The race is hard; the cobblestone is ludicrous.
With that as context, Thursday started in cold rain, and the road gets comically rougher the more we inch North – either pitted with chains of potholes or studded with jagged rocks permanently set into the hardened mud road. There are occasional breaks where the road is just hard packed mud with waves and divots worn into it by heavy trucks. Thursday and Friday introduced two new road features: first, grooves. These are presumably naturally occuring channels that seem to occur on some hills. Barriers have been formed into the road, creating a six inch high lip. When they appear you have a split second to decide whether to ride in the groove or the main road. Choose wrong and you are locked into a nasty ride.
Friday introduced a new trick: fresh gravel. Gravel is usually a manageable challenge, but it becomes scary when it pools. The bike can swim or fishtail, and you can lose control quickly. None of us have had any real issues, but it does keep us in edge.
Thursday was a long riding day with at least two memorable hills. Friday had more hills, equally memorable. Hard as they are, they usually come with the reward if a great vista. But something had to be said about the decents. Whether straight down, curved or winding these can be thrilling. We have factor in the uncertainty of road conditions and occasional high drop-offs, but cars are rarely an issue and with Scott guarding our rear flank with the RV. Since we have been conditioned to accept that every downhill will be followed by an uphill, the tendency is to gain as much momentum as possible. Again, thrilling.
Friday, we crossed into the Arctic Circle. The sun was out and we were warm. We are just on the edge of the tree line, so still fine to enjoy them, but we are getting glimpses of what’s to come.
Back to Paris-Robaix for a second: Keep in mind that only about 20% of the course is on cobblestones. The rest is well-maintained road ways. Our challenging road conditions are all day, every day. Just saying!
September 4 – Water
When you are this remote, it is not just the conveniences that you miss, it’s also the necessities. There are virtually no sources of food, potable water, gasoline or anything, other than what nature provides. We were forced to estimate all of our resources to make sure that they would last until they could be replenished. Math says we’d be okay; reality says otherwise.
We left Tombstone Territorial Park with our RV water tank almost empty. The sites are all unserviced (no water or electricity) and, unexpectedly, the Park’s lone fresh water spigot was already shut off for winter. We really needed that. Our plan was to have some jugs of water for drinking, and supplement with the RV tanks. Now with our tanks empty, we have cut out any extraneous user of water, that includes washing dishes, washing our hands and even making rice for dinner.
We have become nimble when it comes to opportunities for food and water. We learned about a hunting outfitter who might be able to sell us provisions, but we were warned that drop-ins were not welcome. Paul and I trepidaciously cycled the long path to their compound and found the most wonderful people. It may have helped that they had heard our recent radio interview on the CBC and were supportive of our initiative. They filled our arms with loaves of bread, then went back to get sone homemade cheese buns (which were exceptional), and then went back again for freshly baked banana bread (which I understand from 3rd party accounts was also exceptional). They would not accept money.
As for water, that would be a bigger problem. We had eight 4-liter water bottles, but four were already empty. We came upon a work site and, despite the warnings to stay out, we ventured in to inquire. They were a little leary at first, perhaps not wanting to set a precedent, but ultimately let us fill our bottles. When leaving I asked confirmation, out of an abundance of caution, that the water was potable, to which he replied, “this is probably the best water you’ve ever had”. It turned out to be true.
The last two days featured some big hills, which we all did to the best of our abilities – maybe more. However, yesterday’s post-climb downhill was spoiled somewhat by stiff headwinds, and today’s was largely non-existent, though no hard feelings about that, since we had a full day of blue skies and t-shirt and shorts temperatures.
If any of the foregoing strikes you as desperation, hardship or regret, let me be clear: I can’t believe how lucky I am to be here and I can’t believe that I get to do this. These days have been magic, with much to come.
September 2 – Tombstone Park
Today was a cycling day off, pre-planned to occur after yesterday’s challenging first ride. So, naturally, we climbed a mountain.
We started the day at the Park interpretive center to “learn more about our environment” [only proper bathroom for 3 days], and we are treated to grizzly and black bear pelts that we can wear and animate into “Nature Gone Wild” battle scenes.
We then spent the remaining 4.5 hrs hiking on Goldensides Mtn to the top. This is the face of rugged beauty, and we are seeing this region at its prettiest. The cool autumn brings autumn colors of auburn, yellow and red to the low shrubs and ground cover. I could bore you with pretty descriptions and other mellifluity, but better to just make this a photo montage.
PS yes, it did start snowing on us.
September 1 – Dempster fire of a day
Man plans and God laughs
After months of researching, preparing, meetings, voting, re-evaluating weighing options, evaluating, budgeting and tabulating, our big day has arrived. Today is Day 1 and mile 1 of the Dempster Highway.
Things start out fine – we are up early for a 7:00 am breakfast and ambitions of an 8:30 am start. To that didn’t happen. First off, we arose to rain. And not light rain or a passing shower – this was a cold morning with a lead-grey sky and thick ground-level fog.
We take our time getting out the door to but, when we do, I discover that the brand new cleats that I bought for my brand new cold-weather shoes turned out to be cheap junk, and the metal just mushed about instead of clipping in. It seemed to take forever to diagnose the issue and then resolve it.
Okay, abortive start, but now we were off. This is a slow riding road. It has a gravel surface that is heavily pocked with water-filled pot holes. The five of us ride close together and Scott drives just behind in the RV. He honks to alert us to cars approaching from the rear – once for a car and thrice for a truck. Multiple blasts means something unexpected is coming. The speed limit is 90 km/hr, which seems insane given the conditions. Luckily, few drive at this speed, except for large tanker trucks hauling volitile, highly reactive chemicals or long-bed trucks hauling oversized mining equipment – they use all of that 90 km/hr. At one point the RV blares out a loud grinding squeal, but this ultimately vanished as abruptly as it arrived, with the cause left to speculation.
Then I got a flat in the rear tubeless tire of my borrowed bike. Hmm, this is supposed to seal and repair automatically with a latex solution stored within the tire. It didn’t, nor did it hold air even after more sealant was added. This was a major threat, as there are no bicycle shops on our remaining journey and my own knowledge of tubeless bikes is as deflated as my tire. This episode does show vulnerability to the entire team if one person is challenged in this remote location, prompting “what if” conversations, but this was ultimately rendered mute when the sealant finally worked in the third try.
The rain continued to fall all day, as did temperatures, and fingers and toes started to throb. Also, the ride climbed gently but constantly for the entire day, making us endurance riders, not just for the distant we rode (75km), but for the wet, slow and cold conditions that we had to “endure” along the way. However, as we crossed into Tombstone Territorial Park it all began to make sense. The beauty of the region kicked up a notch. We goht in quite late, though safely thanks to the late sun sets in the North
Shout out to Mansfielder, Bruce, who is part of a motorcycle group cycling in this area, and who we met en route.
Aug 30 – In flight
I’m on Air North flight 824 and I’m sitting beside Matt and Michelle on route to Whitehorse, Yukon. Michelle is a nervous flier and, sweetly, held my arm as the plane took off. This couple is about to start a great adventure and, like Michelle, I am also nervous – not about the fight, but about what happens after we land. I’ve always been of the view that there is little to worry about as we transit the world; there is civilization all around us – food, provisions, local knowledge, systems for safety and health. But there are still places left that have few of these necessities, and we bought a ticket to a particularly formidable one. Throw in bears, wolves and long-haul truck drivers, and danger has a new address.
Once in Whitehorse, Lloyd and I do a fun CBC Yukon interview. Then our group of six meet for dinner at the Dirty Northern Bastard restaurant, where we meet David and Barbara. David has PD and Barbara is his physiotherapist and muse. I started a conversation about life with PD in remote areas. I expected to hear details about inadequate or irregular services, insufficient government support, and/or details about his the system is broken. I heard the opposite. These people are content, even delighted with the service that they receive. It seems that the Yukon government attends well to it’s residents, usually involving subsidized travel to Alberta or BC, accommodating practitioners, and free educational resources from Parkinson’s Canada or one of the Provincial equivalents. It seems that if you can self-advocate, you can have good, even great care in remote areas.
Tonight we are hosted by a lovely couple, Meg and Sam, who took us into their house, sight unseen, and happily shared their space with us. In fact, they just left entry instructions and showed up in their own schedule. It is heartening to know that these types of people are still out there, despite everything. We chat for as long as my jetlag could tolerate, then crash
Tomorrow, we hit the road in an RV for our 6 hr drive to Dawson City. After that the days events are loosely scripted, except for the daily 4-6 hours to be cranking away in the saddle. Things will happen, plans will be amended, stories will be written, memories forged and, with luck, we will find a Parkinson’s community that needs us.
East Team
Day 44: September 8, 2024
My cycling story started three years ago when I was living and working in Prince Edward County.
In April 2021, I learned through local news that in August Parkinson Canada would hold a cycling event “Pedaling for Parkinson’s.” I had never participated in any events associated with Parkinson’s before, and I had never known anyone with the disease before. I looked at the participants’ board: a team called Rigid Riders was the top fundraising team. That was the first time I learned about this cycling club, an encounter that was going to change my life.
I emailed the contact person of the event, Jim Redmond, briefly introduced myself and mentioned that I might be interested in participating in the shortest ride on the event day, 40km. I received a warm welcome email from Jim and learned that he was riding the 100km route. Jim must be an elite athlete, I thought.
I was going through the darkest period of my life at that time. By then, I’ve been living with Parkinson’s for a decade, and I started to experience fast progression of symptoms. I was a newcomer in a small town of 500 people when social distancing was in practice. For reasons related to parkinson’s, I checked myself in the emergency room twice in a month. When I caught myself watching YouTube videos on suicide survival, I called Ontario mental support helpline. I started to write gratitude journals every day, and I decided to move back to Toronto.
I didn’t end up riding at the cycling event because with my poor physical condition at the time, I didn’t think I could ride 40km. But I did reach out to Rigid Riders and introduced myself.
The first group ride with Rigid Riders, I didn’t have any balance on the bike, and I fell on a downhill. I was embarrassed, but I soon learned that I’m not alone falling off the bike. I rode with these riders every Sunday since then. I gained confidence, strength, and friendship. At that time, my longest cycling distance was perhaps 30km.
In 2022, four Rigid Riders, Jim, Steve, Mike and Darline, decided to do a spinning wheels tour to cycle across Canada from May to September. Following their updates every day, I would hop on my bike and ride till exhaustion. In September 2022, I finished my first 100km ride in Orangeville, Ontario. I was amazed that I could do it, challenging but achievable.
The Spinning Wheels tour opened my eyes. They showed the possibility of doing hard things even with parkinson’s. They showed the potential of human body and mind. And they planted hope in my heart.
Now, I have become a cyclist, too. This year, I rode 8000 km across the US and five provinces of Canada.
My cycling story started three years ago. If I can do it, I believe anyone can do it.
Day 43: September 7, 2024
I couldn’t stop smiling! We had an amazing time here, in Baie D’urfe, home of our friend and organizer of this event, Ken. If you don’t know how to pronounce the name “Baie D’urfe,” well, please Google it.
This morning, nine cyclists in neat spinning wheels uniforms made a presence along St. Lawrence River. Jane, Brittany, Rick, Mike, and Charles, the Toronto gang, just arrived last night at Montreal to participate in the last leg of the Eastern ride. And four young lawyers from McGill, Max, Shirley, Ivan, and Gwenth joined us for the group ride at Marguerite Bourgeoys Park. Together, we cycled from downtown Montreal to Baie D’urfe, a gorgeous small town by St. Lawrence River. After two weeks on the road alone, I felt really nice to ride with a team again. And it was magical riding into a community where we know we belong and bond with, at first glance.
Entering the town, the rain started pouring. But we were greeted by cyclists, police officers, the mayor and her husband, PD researchers, and their family and friends. Three police vehicles escorted us all the way to the town community center. (How cool is that!) Then we saw more people waiting and cheering for us at the community center: our dear friends in YOPD group Ken and Rob and their family, local MP, PD exercise groups, town council members and volunteers, a scout group, and their supporters. They know what we are doing, they read our stories on the road, and they care and want to help.
Ken asked me to prepare a talk a few days ago. But standing in front of this group, warmth flew through me, and I decided to speak from my heart. I talked about my journey with the disease and the people we met that inspired us to pedal forward every day. After the talk, people came to me in tears and thanked me for giving them hope. I was deeply moved by what I saw and what I heard.
On this trip, we received so much more than we shared. Thank you Ken. Thank you Baie D’urfe. We are grateful for all the love.
Day 38: September 2, 2024
Ride in the wind– Ride with the wind
I walked out of the cafe and got on my bike. The next moment, the guy sitting on a bench by the street opened his mouth with shock. He just witnessed an action scene: I was blown off my bike and landed in a flower pot.
For the past two weeks, I was the only rider on the Spinning Wheels Relay Eastern team, and every day, I was battling with strong headwind for five to seven hours on the bike.
Riding in the wind can be very challenging physically and mentally. I remember one day on the road, an open area with endless corn fields, I was pedaling so hard that I thought I was going to throw up. I laughed desperately when I saw I was traveling at only 13km/h. At that point, I’ve already been on my bike for 4 hours, and the destination was still 80km ahead.
I never thought I would have to deal with wind of this level. In the past, whenever facing headwind, I just imagined myself as a blade cutting into the wind, and I would pedal hard and power through. But this is different. It seems that I have no chance of winning this battle. Exhausted in the wind, I changed to smaller gears and tried to relax my body. I thought: why not learn from sailors, observe the wind, and work with the wind.
As I started to observe the wind, I found that the wind was actually coming from all directions, although it felt like it was just blowing into my face. There was even a stream of wind coming from behind, pushing me forward. I then focused all my mental energy on the wind at my back. Interestingly, the ride felt easier, less exhausting, and powered. For hours, I was practicing this focus, and it was not that mentally challenging anymore.
This is also parkinson’s, isn’t it? Initially, it feels like a strong headwind, exploiting the good in your life, taking away strength and joy. But if you slow down and observe it, there is a force pushing you forward, slowly but surely, forward. That force is community. And if you work with the force, commit to focus on the good, you will discover a new world, a wonderland with hope.
Don’t get me wrong, riding with headwind is still one of the most difficult things I have to face on my ride. Being in a supportive community doesn’t make symptoms disappear. But it’s so much easier when you know they are always there with you to face the challenges, always.
Day 35: August 30, 2024
After riding 577 km in 8 days, I crossed the border of New Brunswick and Quebec on Aug 29. Got an hour back, a different language to deal with.
He doesn’t speak English, and I don’t speak French. I typed in Google Translate, “I’m cycling across Canada to raise awareness for parkinson’s disease,” and showed the translation to him. He was silent for a while and got tears in his eyes. He patted my back, “Thank you.”
I met this guy at a stop sign on Sentier Transcanadien trail. Disappointed to see the trail across the road under construction, I saw him standing next to the stop sign waiving at me. His work is to transport cyclists who get stuck, like me, from this end of the trail to the next trail opening. The drive is only 4km on the highway.
We spent 5 minutes in the car and we didn’t speak, but I cried on my bike after waving bye to him. Human connection doesn’t require words. You feel it with your heart. I don’t know at that moment what he thought of, but I know he appreciated me for my service, and I appreciated him for his.
Every day, I get up, get on my bike, and pedal to the next town 100 km away. If I tell you it’s easy, it’s a lie. I don’t have a great balance on the bike because my left foot is weak and my right foot is dystonic due to parkinson’s. My right hand is always numb because of the rigidity in my shoulders. I can’t lift my head all the way up because of my dystonic neck. I have random upper body movements that cause me to waver around on the road, that’s dyskinetia. When I’m off, I have problem breathing on the bike, I feel hollow in my legs, and my muscles lock up.
What keeps me going is the human connections I experienced on the road, like this, like in many other stories. They touch my heart and give me hope, courage, and faith.
Day 34: August 29, 2024
Conversation between Callum (Eastern team driver) and Li (Eastern team rider) part 2.
Theme: Learnings on this trip
Callum: Do you think you learned things about yourself on this trip?
Li: I realized that on this trip, I have a clear goal, and I put it as my priority. The goal is to cycle and make connections with people. I’m not trying to be everything for everyone and keep myself super busy. This is definitely growth for me.
Li: What did you enjoy the most about the trip?
Callum: My favorite moments: The night at Gary’s cabin, pass Gamble in the woods, we hang out with the team. The whole experience at the beach house at PEI, it felt like a vacation in the middle of the trip, which was really needed to recharge.
My favorite place is Newfoundland Chance Cove.
Callum: What about you?
Li: Many. Some funny moments like Roy took a shower in public at the baseball court and seen by locals, which was hilarious.
We jumped off the bridge to the river.
The first night we had campfire, we sat around the fire and chatted, and we saw so many stars in the sky.
The day on the highway, you, your grandpa, and Mike were waiting and cheering for us at the exit.
……So many great moments.
Li: What do you miss the most on the trip about home?
Callum: I miss hanging out with my friends every day during the summer. And I miss my girlfriend, but she came over, which was really nice.
Callum: What will you miss most about this trip when you get home?
Li: On the trip, every day I have 5-6 hours of cycling, which is kind of intense. I will miss the intensity of living like that. I feel more alive with the intensity.
Li: Same question to you.
Callum: One of my favorite parts is going to a new place every day. I don’t love routine and structure. This trip you never know what’s gonna happen the next day, even things that go wrong are still exciting. I’ve started to miss camping.
Callum: If you were to come back and do it again, which province or place you want to come back to?
Li: PEI. I love the confederation trail, I would love to ride on it again. And I heard from Steve and Lloyd so much about how wonderful and supportive the whole community is, I would like to connect more with people. We stayed at the beach house this time, it is a really cool place, but I feel that there is a disconnect with the community because we wanted to go back and hang out after riding.
Day 33: August 28, 2024
We woke up in the rain. The sound of raindrops knocking on my tent is so calming that my morning rigidity went away as I lay on the ground and enjoyed the moment. Two meters away, Callum’s tent has become a puddle, and his sleeping pad is soaking wet.
During this trip, we only had five rainy days, and we peddled through all the wet weather. It can be very cold if one gets wet on the bike and faces strong wind afterward. Considering the depressing headwind I have been dealing with in New Brunswick these days, we decided not to ride in the pouring rain today.
On our trip, I got asked many times about the road conditions of each province. Here I’ll do a summary of the places we have been.
Newfoundland: We cycled through T-railway trail and Cross-Canada Highway. I don’t recommend either of them to other (road) cyclists. T-railway trail is quiet and beautiful, but it’s only good for fat tires and ATVs, or very experienced gravel/ mountain bikers. Cross-Canada Highway, busy roads, very noisy, a mix of wide and narrow shoulders, annoying rumble strips, with some terrible drivers who don’t give cyclists any space; the experience with highways is very similar in all the other provinces.
Nova Scotia: We did most of the distance on those calm country roads. It was great pleasure riding on those roads as they are very well maintained, which reminds me of the roads in Virginia. We rode a big loop along the coast in Nova Scotia, and to our surprise, it was endless steep rolling hills the whole way. But you can always peak the ocean view, making the climbs worthwhile.
PEI: Many people told me that PEI is flat. It really depends on what route you choose. We rode on the Cross-Canada Highway, pedaled through countless major climbs; we also had so much fun on the confederation trail, an awesome cycling trail across the island, over 300km flat and easy gravel roads. If I visit PEI again, I would like to ride coast to coast from west to east on this trail.
New Brunswick: On our first day in NB, we went to a bike shop for some repair and talked with the bike shop owner about the route in NB. Typical roads in NB, according to him, are roads with cracks and pitfalls. I have to say that the roads get worse as I cycled into the west. Sometimes, seeing those roads with a million patches, I stop and wonder, is this really a main road of the city? Meanwhile, it gets so hilly northwest of NB. We arrived at Grand Falls today and wanted to ride around to see the falls and this lovely small town. After 7km, we gave up. It feels like every direction there is a steep hill, and we are always at the bottom of another hill.
Wind, rain, heat, hills, and gravel, these are inevitable challenges we have to face on a long-distance cycling trip like this. One day at a time, as I ride more, I gradually have more acceptance and appreciation for these different conditions. For instance, I am learning to view strong headwind as a test of my perseverance and climbing hills as a test of my passion. Fun mental experiments, would you agree?
Day 32: August 27, 2024
Conversation between Callum (Eastern team driver) and Li (Eastern team rider) part 1.
Theme: riding alone/ driving alone
Background: For the most part of the trip of the Eastern team since July 27, Callum has been driving the support vehicle by himself. Since Aug 24, Li has been the only rider of the Eastern team as all the other riders returned home. We wanted to share our experience here.
Callum: Do you think that cycling alone helps you go faster?
Li: No, I realized cycling with other people makes me go faster.
Li: Do you feel lonely when you drive alone?
Callum: Sometimes, but usually no. I’m too busy to feel lonely. I’m always either going somewhere or doing something, I never just drive mindlessly.
Callum: Do you feel lonely riding alone?
Li: No. When riding alone, I don’t listen to music, I would keep my focus on breathing and pedaling. It feels like meditation, moving meditation.
Li: What you wish you had when driving alone?
Callum: Sometimes someone to talk to, I guess. Usually, I enjoy being alone for a bit. I wish I had a nicer car (laugh). I don’t think I need anything.
Callum: What’s the scariest part about riding alone?
Li: I’ll give you an example. The morning I left River Run campground, I followed the Google Maps cycling route to Fredericton. Very soon, I realized that it was back country roads, deep into the wood, unpaved, and as I cycled further, the road got narrower and worse condition. I was thinking about 100 ways to get killed in the woods. I might come across a black bear, a moose, or simply get lost since the cell signal was very bad. So after 13 km riding on that road, I decided to stop going forward and rode 13km back, and got onto another road. But normally, I feel comfortable and confident riding alone.
Li: What is your concern when driving alone?
Callum: When driving a long time, it’s easy to zone out and get sleepy. But it’s not really too bad. Another one is that I’m bad at directions. Sometimes, I start driving without knowing where I am going, I would get stuck on the highway, and I can’t get off, just wasting gas.
Callum: What is your favorite part about riding alone?
Li: The favorite part is to ride with my own pace, a sustainable pace, and stop whenever I want. I usually stop several times on the ride, to drink water, to eat snacks, or to take pills. But when I’m with a group, I’m hesitant to stop all the time because it might interrupt the rhythm of the team.
Li: Advice for the driver of next year?
Callum: Try to stay relaxed and stay calm. It’s easier said than done. When you have 10 riders out there, you feel responsible for them because you know that if anything happens to them or if they need anything, you are the one to go take care of them. But you also have a million other things to do. It’s important to stay relaxed and go with the flow. I feel like I’ve done a good job most of the trip, but when we had more riders, I found myself super stressed out, and it was not fun. Next time maybe there should be two drivers.
Callum: What’s your thoughts about New Brunswick compared to other provinces?
Li: NB is beyond my expectations. I remember the evening when we were driving to the campground, beautiful sunset and clouds, the long bridge and river under, the mountains around and the reflection in the water. It was a memorable moment for sure. The several interactions with locals were lovely, at parking lots, at the bike shop, cafes, and at the brewery. We heard stories about their colleague, family and friends with parkinson’s.
Day 30: August 25, 2024
Riding my bike
The weather looks good
Not too sunny, not too windy
Not too cold, not too hot
I want to ride my bike outside
But the bike is dusty
The chain is rusty
The roads are busy
My light battery is empty
I’m not sure how fast I can cycle
I don’t know how far I can make
I might fall and hurt myself
I don’t know the bike lanes around the neighborhood
There is one reason to get on my bike
Exercise makes a healthy body and mind
Yet there are a hundred errands more urgent
And they say a thunderstorm is on the way
On bike, his hands stop tremor
On bike, her mind is clear
On bike, his balance gets better
On bike, they all appear happier
There is one reason to get on my bike
Exercise makes a healthy body and mind
I should ride my bike
I want to ride my bike
I will call a friend
See you later on the road
Day 28: August 23, 2024
It was a beautiful moment. We held hands and formed a circle, grooving with the music, we expressed our gratitude to each other. Hands were warm, so were our hearts. Love flowed through the circle. Thank you, Julia, for inviting the Spinning Wheels Relay team to your Dance for parkinson’s class.
The dance class marked the end of our cycling trip in PEI, the third province, 5 days of 240 km riding.
In PEI, we had the biggest crew of 14 riders. As we head west to New Brunswick, I have to say goodbye
every day.
Thank you John, Billy, Steve, and Lisa, for flying from Toronto to PEI to participate in this ride, you made this ride rich in stories and laugh. Thank you Steve and Zane, you inspire the team to pedal harder, go faster, and have fun. Thank you Mike and Marisa for your generosity, we really appreciate your lovely beach house, especially after days of camping in wet weather. Thank you Brett and Sofia, you are always ready to help, with patience and empathy, you tightened the bond within the team. Thank you Jane, for your support and love to the team, your endless energy will be missed in the van, on the campground and on the ride.
And I have to say bye to my dear teammate since the start, Lloyd, thank you for organizing this event. You are touching people’s hearts and changing people’s lives. You make the summer meaningful for us and the positivity and impact will last years, even lifetime. We have been the best duo in media interviews, and I will miss riding with you on the road. I hope you all the best in the next adventure, can’t wait to hear stories from the north.
In PEI, we stumbled upon something beautiful. It reminded me of the moments when we battled the headwind, when we were exhausted on climbs, when we fell in gravel, when we starved on highways, when we laughed, cried and held each other tighter.
Steve Iseman’s Blog entry
Saturday Aug 17 – Observations
This is a supplement to Li Jiang’s official “daily” blog.
My son, Zane, and I joined the East Coast leg of the 2024 Spinning Wheels Relay on August 14. Much of our experiences have already been well addressed in Li’s blog, so I won’t duplicate.
First, a few words of commendation: Two years ago Jim Redmond, Mike Loghrin, Darlene Richards-Loghrin and I started something interesting. The 2022 Spinning Wheels Tour was a bold idea – muscling our way across the country by bicycle, despite our impediments – and it proved to be both a successful fund-raiser campaign and a way to reach people living with Parkinson’s. Far too many of these people are undisclosed or undiscovered, and willfully blind to the challenges and triumphs that would or could be awaiting them in the years ahead. But our methodologies were far from perfect and our reach was limited. The idea needed a boost to take this to the next level.
What Jim, Mike and now Lloyd Taylor have done with this Spinning Wheels iteration is humbling. They have taken our fledgling first steps and transformed them into a superbly organized campaign with a talented team, excellent support, and much broader community involvement. Of course the majority of the work is done by teams of enthusiastic supporters, but there’s skill in knowing who to call and engaging people with the will and capacity to help. The result has been electric and this annual event is destined to have enduring importance to the Parkinson’s community in Canada and abroad.
I joiined the team in Halifax on August 14. I was a somnambulistic mess, having just returned from a separate Parkinson’s bike event in Norway the evening prior – six hrs jet lagged and with little sleep for two days. But there was a schedule to keep, so we were off.
Cycling with Li again is a treat; a call back to our trip across the US that ended just a month and a half prior. It is also wonderful to ride with Lloyd once more. He is faster than when we last rode together a year ago. It is beguiling how they continue to improve year-over-year despite everything. Can a Netflix series be far behind.
Some highlights of our excursions:
Our stop in Maitland N.S.- a speck of a town buried into one of the rivulets extending from the Bay of Fundy. Every encounter in this town was memorable. Our dinner at Mud Slide restaurant was made instantly memorable by our straight-talking host, Mani, who turned his checkered Toronto past into a movie-ready character slinging one-liners with a fun attitude and great food. Then the owner, Troy, who’s equally movie-ready backstory (detailed in Li’s blog) is one of the most harrowing and inspiring tales of persistence that I have heard. And later that night in the recreation hall of our campground, we got to sample some of the famed Newfoundland/Maritime hospitality, as a collection of regulars broke through our famed Toronto reserve, and treated us to beers, shots and their special brand of Atlantic warmth, as we danced, sang and howled the night away. Finally, the land itself added to the thrill the next morning, as we got to witness the immensity of the tidal changes that turned soggy red fields into a full ocean inlet. It happens so fast that locals say it cannot be outrun if you happen to linger too long during a sea floor walk.
Our own Susan Fullerton, who couldn’t ride much of the time for a few reasons, contributed mightily with arranged events. I got to attend the Truro event, which included the inspiring members of a “lemonade stand” club of indominably-spirited people supporting each other through health challenges. We also had a cycling safety lesson and snap exam from Daisy, the owner of Hub Cycle, who admirably refused to flunk Lloyd and I when we fell hard mid-lesson, nor Li, whose three month old helmet told a tale of multiple head traumas.
We had so many acts of support and kindness from strangers who approached us after reading our shirts or van signs, and shared their stories or donated funds. The frequency of encounters increased substantially after Lloyd and Li’s CBC radio interview, which launched both of them into local stardom. It is tough to top the generosity of Anne of Green Gables chocolates, who stuffed our cycling shirt pockets with bags of chocolate and candy, but a favourite encounter was a couple from Connecticut who approached us while we awaited lunch, to commiserate and tell us about challenges with their PD afflicted friends, and then snuck away to pay for the meals of the entire table.
The riding has been extraordinary. It has been a distinct pleasure to ride with my son, Zane. He is a powerful and enthusiastic rider, who never once balked at the distances planned or the pitch of the hills encountered
So much thanks is owed to Mike and Marisa, friends of Lloyd and Jane, who loaned us their beach house in PEI. This gorgeous place, with endless grounds, broad porches, beach access, and comfortable accommodations was just the respite we needed from wet morning camping. When not riding, this house was the stage for Zane’s excellent cooking, Steve’s (other Steve) 24/7 office hours, Billy’s raunchy stories, Lloyd’s underwear model entrances, John’s “oh my gawd” moments, Li’s acrid coffee, Callum’s precocious organizational mastery, Sophia’s laughter, Jane’s high-wattage energy and enthusiasm, Brett’s humble “go with the flow” ways, Lisa’s intelligence and calm despite the madness around her, and my reliable evening narcoleptic episodes. So much love and laughter, and a house just big enough to contain it all in comfort.
This relay is a very successful new cycling event with multiple goals: awareness, community building, and fundraising for local projects, especially cycling projects. But this initiative already has additional achievements of note: it has helped to start a conversation about cycling’s significant symptom reduction and mood enhancement benefits; it highlights cycling as a fun and active focal event around which a community can form, rather than just passive group talks; and, it helps to create role models in a society that really needs them.
I am so proud to be part of this initiative for now and the future.
Day 25: August 20, 2024
Charlottetown- Cavendish
Distance: 51.4 km
June lifted her bike into her truck and handed us 50 dollars, “This week is our 50th wedding anniversary. My ninety-year
-old mother gave this to me and asked me to do something wild with it.” We didn’t want to say goodbye to this lovely lady.
An hour ago, we stopped by Dalvay by the Sea, a hotel at PEI National Park, to use their washroom. Two ladies eating at the restaurant of the hotel recognized us,”Are you guys riding across Canada for parkinson’s disease? We learned about your story on Monday’s radio.” Happily surprised, we asked their names and their connections with parkinson’s. Turned out that June and Lynn didn’t have any family and friends who have parkinson’s, but they were inspired by what we are doing.
Five minutes later, we got a new rider and a photographer on the road: June, 70 years old, pedaling with her Birkenstock clogs, smile on her face; and her friend Lynn driving ahead to take pictures and videos, cheering for us.
Joanne and Bill were our second encounter of the day. Noticing the words on our jerseys “Spinning Wheels Relay to End Parkinson’s”, they came to us, “Thank you for doing this!” Turned our that the couple have two close friends with parkinson’s. The disease takes a toll on their friends’ body and mind. For years, the couple has been encouraging their friends to get out of the house and do sports together. They love and care about their friends deeply, but they don’t know what they can do to help their friends.
Joanne asked, “Is there anything else we can do to help them?”
“Tell them I’m here with you, we are facing the disease together.”
Behind his sunglasses, something is melting in Bill’s eyes.
On this trip, we aim to raise awareness of parkinson’s, to inspire people to exercise, and to connect them with community. At the same time, I’m constantly touched by the people I meet on the road, by their words, their actions, and their spirit. They inspire us, encourage us, and teach us lessons in life.
Day 21: August 16, 2024
Maitland-Pictou
Distance: 111.7 km
Elevation: 960 m
“Laughter, joy, and fun are not normally associated with Parkinson’s. Community appears to make it so.” -Ed Johnson
We started our trip in Nova Scotia on Aug 9 in a small village, Gabarus. Following the bumper of a fire truck, the Spinning Wheels Relay team rode into town, loud and clear, with fire siren. Applauds, hugs, tears, laughter, and camera flashes, soon we found ourselves in the fire hall, warmly received by a crowd. This is Roy’s home, Gabarus, a 300 years old fishing village , only one road connecting its 81 residents.
“I’m doing this ride for my friend Lloyd, also for my aunt Diane. ” Diane was diagnosed with parkinson’s 8 years ago in her late 70s. As her symptoms progressed, she was unable to live by herself anymore and moved to a senior house in a town nearby. Holding Diane’s hand, looking at her, Roy got tears in his eyes. I walked up to Diane, she had a big smile on her face, I hugged her, hearing a whisper at my ear, “your smile is precious, don’t ever lose it.”
That afternoon, 78 people came to the fire hall to welcome us, we talked to everyone, visited the lighthouse and neighbors. When we finally got back to Roy’s parents’ house, it was getting dark. Seeing us back, Diane held the walker and stood up, smiling. Hugged us goodbye, she headed home. We learned that Diane insisted on waiting for us to say goodbye despite feeling tired. We were told that she hasn’t smiled for a while, but today, she was lightened by joy.
Every day, people like Diane remind us why we are doing this. We are grateful and hopeful. Thank you Roy, Allister, Sandra and neighbors.
After 9 days, 627 km riding in Nova Scotia, we are lining up at Caribou ferry deck. In an hour, 7 riders will mount onto their bikes and continue their adventures in the third province of this trip, PEI.
Day 20: August 15, 2024
Truro-Maitland
Distance: 68 km
Elevation: 921 m
We landed at North Sydney, Nova Scotia, after a 17-hour ferry from Argentia, Newfoundland, on August 9. Riding a big loop of over 700 km from Cape Breton Island to Halifax to tomorrow’s destination, our last stop in Nova Scotia, Tatamagouche. The past three days, our 5 cyclists have been cycling along the northern coast, which has been challenging on our bodies and minds with endless steep rolling hills. Every now and then, we got to enjoy a peek of the incredible ocean view, shades of blue, red, pink, purple, and black. We are falling in love with the ocean again every day.
After a day of climbing, we walked in a local restaurant, Mud Slide Cafe, loving the cozy vibe; we met the owner of this place, Troy. He cares about what we are doing, grabbed a chair, and we started talking.
Seven years ago, Troy had a stroke. A fist-sized part of his brain was dead. He lost his sight , his speech, the capacity to walk, and major connections with his body.
Fortunately, he has friends and family members who are doctors. They didn’t give up on him and came up with a rehab plan for him after thorough testing. Troy then started his long journey of recovery.
Learning to speak a word took him a month. He spent countless hours on deliberate movement exercises to rebuild neuro connections between his brain and body parts. To regain his sight, he started with recognizing shades. For years, he spent 8 hours daily doing different rehab exercises, executing the recovery with discipline and strong will.
Today, he is still in recovery. What we see in front of us is a man with perfect speech and smooth movement. If he didn’t share what he had been through, we would never have guessed it.
Troy made his way back to life. Now, apart from running a restaurant, he also works with kids with disabilities.
Good food, great learning. The trip is the destination.
Day 19: August 14, 2024
Halifax-Brooklyn, NS
Distance: 111 km
Lloyd hurt his ankle earlier this week. “I had to stop. My ankle is hurting too much. I’m trying to get Callum to get me, “a message popped up on my bike computer. Susan and I were talking to two road construction workers while waiting for Lloyd not far ahead of him. We decided to keep rolling.
Lloyd and Callum called several physio clinics, and none of them had availability. They tried one more clinic, CBI health. They have a clinic in New Glasgow, a small town on route for today. Excited by what we are doing, Andrew, a physiotherapist, took Lloyd in. Turned out that Andrew has an uncle living with Parkinson’s who lives in Whitehorse, a place Lloyd is heading to in 2 weeks, the beginning of the Spinning Wheels Relay North team. After the appointment, they didn’t charge Lloyd and arranged several follow-up appointments in the CBI Health clinics in towns along our route .
An ankle injury, a beautiful connection, turned out it’s not that bad after all.
Two days ago, bikes of our Western team were stolen at Edmonton, Alberta. Jim said, “I was in shock and then my stress level went up and my Parkinson’s symptoms flared up, it took me about 20 minutes to walk the 50 feet to get back into the hotel because I had freezing of gait and shuffle steps and my tremor was going and I had the swimming motions, which I’m still experiencing right now.”
After Jim and Mike shared this incident, messages and emails pouring our way offering help. Some were willing to lend us their bikes, some asked us the replacement cost of the bikes and donated, some offered bike service……
I can’t speak for Jim and Mike that it doesn’t turn out that bad, but from this incident, we see the incredible support and resources of our community. We are deeply grateful for all the help and support.
Day 13: August 8, 2024
Newfoundland is the first province the East Relay team crosses in this year’s Spinning Wheels Relay.
In Newfoundland, at end of land,
places have no address
doors have no lock
towns have no restaurants
hundreds of kilometres with no moose.
There is no cell signal on the road
No shades under the sun
No public transportation in town
And no iceberg beer for Steve Iseman.
713 km on two wheels, we were overwhelmed by the magnificent landscape every single day. Twelve days on the road, countless islanders opened their arms and their hearts. If there is a place called Paradise, that place is in Newfoundland. It is a place you call home, a place you miss, a place of abundance, and sharing. It is a remote place forever living at the centre of our hearts, a reminder of practicing loving kindness to others and to ourselves.
For two weeks, this small but mighty six person crew made an appearance in newfoundland. Walking on the streets, riding on the highway, going to ice cream stores, eating in restaurants, recognized by locals; we felt like local superstars. This team of superstars includes:
Lloyd, team captain and best spoken person. A shaky guy in neon colours, with all the jokes in the world, bright orange and neon pink are his favourite. He has an amazing and supportive neighbourhood where it seems all his neighbours are coming to join our ride, first Ed and Roy, then Steve and Lisa.
Ed, a 71-year-old kid who curses. Pure love for cycling, cooking, organizing, and the people around him. With him in the team, we know we are on time, on route, and well-fed.
Roy, cover face boy and muscle on the road. A big smile on the fat bike, his passion for gravel road is incredible and infectious. Like Ed, on this trip, learning the challenges we face with Parkinson’s every day, he goes above and beyond in helping others.
Mike, everyone’s big brother. He shows us courage, perseverance, and resilience with his actions. He might be slow sometimes on the climbs but he flies like a bird on those downhills.
Callum, team support. He might be young but he is more than capable. He knows which way to go when there is no GPS. He gets us accommodation where everything is fully booked. He gives us comfort riding on the road because we know he is there and always ready for a rescue.
This week, some of my team members are packing up their bikes and heading home. They will be missed dearly. Next week, new riders will join me on the road in Nova Scotia. So the stories will continue.
Day 8 & 9: August 3/4, 2024
Gover Town-Port Blanford-Chance Cove
Distance: 67km, 98km
The past few days on the road have been quite an adventure. The team had 19 falls on gravel roads, walked our bikes for over 8 km in the rain, faced endless rolling hills and bad highway shoulders, soaked in pouring rain, and lost in dense fog.
“This is where I stop pushing myself and turn around.” After two falls on gravel, my arms became more and more rigid, hands became too numb to hold the handlebar and squeeze the breaks, the restless feet made my poor balance on the two wheels worse, and my heart was racing like crazy. Today’s gravel ride was intended to be another opportunity to gain confidence on gravel, but I was suffering on the ride with tears, I was scared. Stopping on a bridge overlooking a beautiful river, I decided to quit trying and turn onto the Trans-canada highway once again.
I started walking my bike towards the highway, defeated, exhausted, and frustrated. It was 8.6 km to the nearest highway entrance, and my teammates decided to walk with me, a full two-hour walk in the rain.
Did I quit because of Parkinson’s? Or is Parkinson’s just an excuse for me not to try harder? This is the fourth day that I ride and give up on gravel. What happens next? Am I ready to try again? If I am going to try again, what is the right attitude to do it?
Our bodies are amazing. They can adapt to situations that our mind can’t even imagine. When I started cycling across the US three months ago, in the first week of riding, my legs became seriously bruised, purple and blue, spreading from top to bottom. I was very worried in the beginning as I thought I had some mysterious disease. After consulting with the doctor, it turned out that the long high-intense exercise caused trauma to my blood vessel and muscles, and the blood vessel broke and bled under the skin. At that time, I was riding back to back 100km days, and before this US trip, I had only done 100 km 5 times in my life. So the level of exercise was definitely overwhelming my body. However, our bodies would adapt to the stress we put it under if we do it right. By the fourth week into the ride, the bruises have all disappeared.
With Parkinson’s, how much should we push our bodies and minds? When do we call it quits?
Day 7: August 2, 2024
Gander-Gover Town
Distance: 71.6m
“Dear Koren, Gary, and family,
It has been a pleasure meeting you guys. We had the best food, best music, best conversations, great places to stay when it’s wet and cold outside. We feel spoiled, and you made us feel special.
You taught us how to treat others, and you (especially Koren) taught us how to love ourselves. You made Gander a special place in our hearts, and we are proud to call ourselves Newfoundlanders, which means people who care, who share, and who love.
We are grateful to have you as friends. Stay active, be well. We will see you soon.
Koren, who has three boys, spends six hours every single day to take care of her symptoms. Today we were invited to participate in part of her routine, an exercise Parkinson support group she created, an hour with them. Our team was super excited about what we learned and how valuable and significant this can be if it is taught to a wider audience.
In the exercise room, people were paired up for basketball hoop games, playing ping pong, juggling balls, and other very-hard-to-describe, but very fun moves and games. Our coach was Nathan, who designed these coordination, balance, and cognitive exercises for people with Parkinson’s. After 9 years with Parkinson’s, Koren is fit and extremely energetic thanks to her commitment and dedication in these exercises.
They are only running the in-person classes locally in Gander now. We feel it is definitely worth spreading and we want to make it happen.
Day 6: August 1, 2024
Notre Dame Provincial Park- Gander
Distance: 38km, 45.6km
“It’s 9 pm now. In the living room, people are still playing guitar and singing together. In the kitchen sink, a cod fish is unfreezing. A couple of rum bottles scattered on the table with “Newfoundland Screechers” certificates next to them. We just enjoyed the best food on the trip, and the sweet taste of the delicious trifle is still in my mouth. The past couple of hours have been truly eye-opening.
Riding on the road this week, we quickly learned “there are no strangers in newfoundland.” The friendliness comes from honking on highways, from campgrounds, from grocery stores, from bars and restaurants, and from people’s backyards.
Today, when we arrived at Gander, a family opened their house to us, but what we experienced was that a community opened their arms to us. Koren, Dave and their three lovely sons, Alexander, Benjamin, and William, living in this house, is the family affected by parkinson’s. Koren was diagnosed with Parkinson’s 9 years ago. Soon after meeting the family of five, we found ourselves shaking hands with the brothers and sisters, the parents, the neighbours, the people in their support group, family friends, and friends of friends. In their kitchen, family and friends were preparing dinner together, and more and more people were showing up in their backyard. Being in the center of this movable feast, Koren was everywhere, talking to everyone, taking care of needs, and her energy was going through the roof. Smile on her face, she was glowing with joy.
This is a thriving person, a thriving family and a thriving community they are building. For Koren, being diagnosed with Parkinson’s was far from the end of the world, it was a wakeup call to live life to its fullest. It was a reminder to be disciplined with exercise and care for her body and mind, to engage with caring family and friends, and to share joy and abundance with others every single day.
I think we can all learn so much from here: How do we live with the disease? How do we thrive?
Day 4: July 30, 2024
Catamaran Park-Bishop’s Falls
Distance: 70km
Riding time: 3h4min
We met Willie and his sister Helen today. For our team, it’s hard to see that this disease has taken so much away from a man and his family, his speech, mobility, social life, job, and hobbies. Sitting at the picnic table at the campground, wearing the Spinning Wheels Relay T-shirt, asking questions, and making jokes, he became part of the team, and I can feel joy rising from his heart. He made our day, and I truly believe we made his, too.
Parkinson’s is a strange chronic disease. Piece by piece over years, it tears apart your identity in life, the identity you have been working hard building for decades; it steals your hobbies and passion, the things you care about, your pride and joy; it drags you away from social gatherings, away from friends, family and communities. Every day, you ask yourself: Am I still able? Am I still capable? Am I still relevant? Am I still lovable? Am I still worthy? Do I still belong?
For a period of my life that felt like eternity, when I couldn’t work, couldn’t walk, couldn’t stand, couldn’t sit, couldn’t write, couldn’t read, couldn’t breathe, and lying down didn’t relieve any tension, I surrendered to the disease and was about to give up hope. I stayed isolated and was suffering every day. I understand Willie and many others who retrieve from their lives because I was there, sitting in the darkness, crying .
Role models and inspiration bring light into darkness. Bill Bucklew, my role model and mentor, greatly changed the way I see life with Parkinson’s. He used to be a runner who ran marathons and competed in ironman, but with the progression of the disease, he couldn’t run anymore, he decided that he could walk, so he walked across the US to raise awareness of parkinson’s, now he couldn’t walk, he started cycling, and a month ago we just cycled across America. He said if one day cycling became too much for him, he would kayak. There is always something you can do, you just need to find it and do it constantly.
Like Willie, reach out and get support. You will find a community with beautiful people. You are not alone anymore.
Day 3: July 29, 2024
Sheppardville, NL – Catamaran Park, NL
Distance: 57.61km, riding on Trans-Canada Highway; good road condition
Riding time: 3h3min
Ascent: 419m
It is a 32-degree sunny day. We had head winds, long hills, no shade, no cell signal, not had breakfast or lunch, and we ran out of water.
In the heat, the day felt longer than it was. We as a team had a tough day today, but all the exhaustion became excitement when we sat down together at Ally’s Cafe at 6pm, staring at our screens and waiting for Lloyd’s TV appearance on the Newfoundland TV Evening News. The day finished with a nice chicken burger and cheering for the great news piece.
Day 2: July 28, 2024
Howley – Green Bay
Total distance: 113.25 km, a day riding on the highways, the road condition was really good. Drivers were very respectful.
Total riding time: 4h30min
Ascend: 720m
The day started on a windy chilly beach. Nobody slept well in the tent the night before because of the nonstop blasting noise from the wind. Don’t be fooled by the benign look of a beach, check the wind forecast before you settle down.
While we were complaining about the wind, Amy from CBC Radio was already waiting to interview us at “the moose,” a statue in Howley, which is not allowed to ride on. While getting ready at our campground, the beach, I asked Lloyd, “When are we supposed to do the interview?”Half an hour ago”, he responded. But Amy was very patient and accommodating. After the interview, she even filmed us riding and said she would pass it to other cbc departments in case they are also interested.
Talking about moose, we saw so many moose traces yesterday on the T railway trail, and everyone we talked to saw a moose, except for us. But today’s moose hunting was a sad story. A dead young male lying at the side of the Trans-canada highway. Three legs were broken fresh. It must have been running elegantly in the woods this morning. Lloyd was very disappointed, “I can’t believe this is the first moose I see.” Before we left the moose, we showed respect to its spirit and prayed for a good ride tomorrow.
The highlights of the day are always about people. We meet beautiful people along the ride, and we have an amazing team. Heard about what this ride is about, we had people pulled over on the highway, people handed over their entire wallet for donation, and people gave us food for free. We feel grateful and full of responsibility.
Nature indulged us by sending us strong tail winds the whole day. When we sailed to 95 km mark on the highway, we saw from far away some familiar faces. Callum, Dave, and Mike were cheering for us at the side of the highway. Although it was out of nowhere, it felt like home for me. Everyone in the team supports each other and cares for each other, and we have so much fun. Mike set up “the kitchen “, Roy and Ed cook fabulous food, organize and route planning, and the Tylor boys are in charge of communication and support. I am really grateful that I’m part of the team. It feels so nice to be taken good care of.
At the end of this big riding day. We all feel proud of ourselves. Roy said, “I proved to myself that I can do this.” 113 km or 30 km, we all pushed ourselves hard and grow stronger each day.
Day 1: July 27, 2024
Deer lake- Howley
Distance: 35km gravel road
Total time: 5 hours
“I am a stone
I am a rolling stone
I’m not afraid of falling
I will gain confidence
You will keep me safe
You will give me balance
I won’t stop, I will keep moving forward. “
This is the lyrics of my theme song today.
Today, the cycling crew finally met the supporting crew in the morning. Very familiar unpacking and packing actions, we are officially on the road. Locals drove all the way to our airbnb and talked with us.
The start of the ride was on a relaxing and beautiful gravel trail, which was suggested by a lady at a local ice cream store. After 10km in the paradise, we turned at the white house, where expectations crashed with reality. This is T railway trail, 25km long for today’s ride, a mix of loose rocks, big river rocks, an incredible steep gravel climb, and wet sand.
The widest tires that my road bike can take is 38mm. However, it’s far from enough for me on this trip in Newfoundland, it seems. Roy said, ” Riding on this gravel, you need to go straight, have speed, and be confident.” None of which I have. Piles of big stones on the trail bounced my bike into chaotic directions, making the riding very slippery, imbalanced and exhausting. You need a fat bike for this, I’ve heard this suggestion over and over again, and now I know.
The day ended with meeting the mayor of the region at a bar and having delicious pasta while watching sunset at the beach.
Day 0: July 26, 2024
It was definitely a bumpy flight coming to Deer Lake at Newfoundland. I even thought we landed in the middle of the flight, then realized half an hour later that we were still in the air. Locals said that it is normal since we were abovetheocean. I was sleeping the whole time so it didn’t affect me too much.
Met a lady Darby on the plane. She lives in Toronto and comes back home to Newfoundland for a visit. She is excited to do a 12-hour hike with her sister next week. Her aunt, who is in her 70s, was newly diagnosed with parkinson’s. I shared with her the Spinning Wheels Relay website, and I hope she can reach out at some point.
Arrived at Deer Lake airport at 1.25 a.m., it was pouring rain outside. No hotels or airbnb is available, so I made myself at home and slept on a bench at the airport. I’m waiting eagerly for the rest of crew to arrive because I am very hungry right now (after devouring a family pack of oreo at midnight) and want to eat at the local fish and chips restaurant. It’s called Off The Hook Fish&Chips. I read every single review at night, and obviously, the food there is fresh and delicious.
Oh and I met a big team of athletes from Japan at Toronto airport, who are heading to Paris for the Olympics. Seeing them I felt excited and somewhat significant, like I am an active witness of this global event. But thinking about what we are going to do for the next two months also makes me feel extremely proud. It’s a privilege to be able to ride a bike and be part of the relay team. During the 5000 km ride, there will be challenging times. But I’m fully aware that the daily challenges many people living with Parkinson’s deal with are probably way harder than what we are about to face on the trip. I’ll keep my head down and keep moving forward.
Rider Poems - Written by the Newfoundland Team
Rapid Roy MacDonald
Roy’s so cool
That cycling fool
He don’t know what fears about
He do 60 kilometres per hour, smiling at the truckers, with a Twizzler in his mouth.
He got a love back home
And his heart don’t roam
But he got admirers all along the way
You outta hear the girls in the purple Jeep screamin
For the gravel track demon
Of the Newfoundland T Railway.
Oh Rapid Roy
That cycling boy
He’s too much to believe
He always keeps an extra tub of PC peanut butter rolled up in his Rock Bros sleeve
He got a tattoo on his arm that says Loblaw
A store walk makes a perfect day
No-name butter on his balls
He is the corporate raider of the Newfoundland T Railway.
Rapid Roy
That fat bike boy
He the best rider in the land
Starts every day early with a boiled egg in his hand
The highway climbs and the gravel trails are easy money in the bank
Feet in the clips
Watch on the wrist
Roy steps on the crank
The Spinning Wheels are teaming
With the gravel track demon
Of the Newfoundland T Railway
Big Bag Ed Johnson
Now the inside of the minivan
Can hold about a ton
But if you’re packing bags in there
You better just beware
of a man, named Ed Johnson
Now Ed, he’s a fancy dresser
And he likes his special clothes
He likes to flaunt his zipper shorts
Up under everybody’s nose
He’s got several pair of gloves
And a Kirkland hat or two
He’s got a shirt with sequins on
That he packed just for fun
That’s why his bag is six foot two
They call him
Big Bag Ed Johnson
The senior member
Of our peloton
He’s only senior cause Dave is gone
But he still wants your respect
Now Ed, he’s a planner
And he charts routes out to please us
But if you follow them you’ll soon be done
And Ed will shout “by the Jesus “
He’s got a cycling shirt
Covered in dirt
In fact he’s got quite a few
And he keeps them safe, neatly in place
In a bag that’s six foot two
They call him
Big Bag Ed Johnson
The senior member
Of our peloton
He’s only senior cause Dave is gone
But he still gets our respect.
Mossman Mike
Newfoundland got its highway
Newfoundland got its railway run
The Spinning Wheels team got big Mike Snetsinger
He’s a bike riding son of a gun
He’s big and strong as a man can come
Sometimes as slow as creeping moss
But when we get to St John’s
His departure will be our loss
And I say
In Newfoundland you don’t see a moose
you don’t put skinny tires on a bike
You don’t eat the yellow ball on a cold plate
And you don’t underestimate Mike
outta Chance Cove came a nasty hill
It must’ve been about six miles tall
We pushed into the ascent and by the midpoint we were spent
Many riders wouldn’t have tried it at all
We crested the summit one by one
Mike must have pulled off to the side
Then out of the swirling mist we saw a black gloved fist
And heard Mike shout “ride, ride, ride “
And we answered
In Newfoundland you don’t see a moose
you don’t put skinny tires on a bike
You don’t eat the yellow ball on a cold plate
And you don’t underestimate Mike
Yeah Mike does it right
He’ll pitch your tent or lend you a bike light
He didn’t ride last time because he didn’t put up his hand
This year he’s making a stand
And we say
In Newfoundland you don’t see a moose
you don’t put skinny tires on a bike
You don’t eat the yellow ball on a cold plate
And you don’t underestimate Mike
The Relay Cycle Queen
Gonna tell you a story that you won’t believe
But we fell in love last Friday evenin
With a girl we met on an arrivals wooden bench
We were just getting ready to get our bag
When she caught our eye and we shared a cab
To a restaurant that she researched In the rain
That night we fell in love with a relay cycle queen
Round and round, her wheels go round and round
The uniquest chunk of woman Newfoundland has ever seen
She’s six foot two weighs one fifteen
A caring old soul
With a streak of mean
She knows how to meddle
And she knows how to pedal and ride
The Spinning wheels website read
She was built like a battery with a head
We could not help but to fall in love
With this relay riding woman I been speaking of
The trip looked fairly simple
Till she cycled into our life
She might be bossy
She can’t read a map
But heaven help the person who would tell her that
She’s a raven haired twister
Our sophisticated opinionated, complicated, chain-cleaning, pants too big, socks just right cycling sister
Round and round
Her wheels go round and round
Ode to Lloyd
Lloyd Taylor he’s got Parkinson’s and a bright and active life
Cheered on by family, friends and fans and his lovely red haired wife
On his bike his hands are steady, his spirit wild and free
But on the hills he can meet his match from a cat whose name is Li
He enjoys a joke, a quip, and a bit of sarcasm too
But when he smiles first from his eyes-
Beware the jokes on you!
Though not a lazy man, our Lloyd there’s nothing he likes more
Than to have a nice sleep-in till noon
While his team mates toil with noise enough to wake the Jesus moon
The biking poet unmatched in skill on TV radio and print
He speaks of Parkinson’s with clarity, enlightenment and wit
And now he’s known by name.
The Newfie fellers nod and grin and Lloyd enjoys his fame.
Lloyd Taylor, he’s got Parkinson’s and a bright and active life
Cheered on by family, friends and fans and his lovely red haired wife.
‘A bit more ode’
Lloyd enjoys his Tequila. He likes tonic with his Gin.
But a hard day of riding without any ale is a pernicious kind of sin
Turn the Page
On a scenic stretch of highway
Somewhere east of Deer Lake
Heavy on the gas
Light on the break
Thinking about the bay
Or the beach from the night before
And your thoughts keep on wandering
The way they always do
When you’re driving all these miles
And so much depends on you
And you could of used more sleep
But there’s a morning’s work to do
There they go
Playing star again
There they go
Up on stage
Here I go
Behind the scenes again
Here I go
Turn the page
You hike out on the trail path
Before hitting the road
You feel the eyes upon you
As you’re shaking off the cold
You flash a smile at two ladies and wonder if they’re old
You join them and begin to walk
They seem to be a fan
It’s the usual old line
“Hey son is that your van?”
As you ask where next they’ll go
And they smile and say Dildo
Turn the page
And there they go
Playing star again
There they go
Up on stage
And here I go
Having lunch again
Here I go
Two women twice my age
Out here on the rock
I feel a million miles away
Every ounce of energy
I gladly give away
Keeping the teams wheels spinning
Is how I spend my day
And If my dad were writing this
I know exactly what he’d say
Callum you make us go
You’re a star my son
Callum here you go
You’re up on stage
Thank-you for being here with me
I couldn’t be more proud of you
Turn the page