this is our story
I was diagnosed with Young Onset Parkinson’s Disease in 2014 at the age of 48. Devastated as I was, it started me on a path of reflection, and I eventually developed the resolve to fight for my most cherished abilities.
I have been a skier and cyclist for most of my life. I love the speed, the community and the athleticism of these silent sports.
And then I lost them both to Parkinson’s Disease.
Skiing was the first to go. I could not initiate turns equally on both sides. It was before my PD diagnosis and my skiing became inexplicably sloppy. I blamed my equipment, the snow, the weather, until calamity struck and I was injured. Post PD diagnosis, I continued to try, but found that I could no longer reliably turn left. I had to stop.
Next, I lost cycling. My legs fell out of sequence when I pedalled – one leg was compliant, rotating in a circle like normal, while the other combatively followed an irregular shape under the control of random spasms and muscle seizures. Cycling became a chore – an exercise in frustration – and I had to stop this too.
But I was not ready to give up on these two loves.
Medication calmed my misfirings and training helped to restore balance and strength. With preparation, I can now cycle again. I go as fast as I can, play in the wind, conquer hills, race with no finish line. The joy is back. I train intentionally, with the goal of improvement, and my skills today are the best that they have ever been. In 2019 I co-founded a Parkinson’s cycling group called the Rigid Riders to motivate people with Parkinson’s to take charge of their symptom management through intense exercise.
I can also ski again. And even though I am a little more cautious now, I consciously savour each turn.
Especially to the left.
Since the dawn of time warriors of destiny have been born under signs of mystery. I however, think I was born on a Tuesday with nothing special or auspicious occurring – just a Tuesday in March of 1971 in Kingston, Ontario. Growing up I played every sport that I could (hockey, soccer, fastpitch softball), but cycling was not one of them.
When I was in my mid 40s, a few years ago now, I started experiencing some interesting and confusing things with my body that would eventually be diagnosed as Parkinson’s Disease. This is when cycling came into my life. When I was first diagnosed, walking and running were mostly difficult but when I got on a bike it was like lightning struck. Although I was not fast in the grand scheme of things, I felt like I was fast and, more importantly, I felt free.
Thankfully I was able to connect cycling and community building and fundraising to try and end Parkinson’s Disease. Eventually that led to me being part of a group that organized a cycling event to build community for people with Parkinson’s and to put money into finding a cure for Parkinson’s. Now, I am on a cross country journey with some very good friends to do pretty much the same: bring together People with Parkinson’s and the people that love them and raise some money to make the lives of people with Parkinson’s better.
I was diagnosed with Parkinson’s just as I was about to turn 50. I was an office administrator for over 20 years before the stress forced me to retire, and I bring my organizational skills from that position to this new venture.
I continue to play upright bass with the band Davis Payne, who have performed at Parkinson’s benefits and many SuperWalks. About five years ago, I took over facilitating the Young and Early Onset Parkinson Disease support group (YOPD) of Toronto. With the video meeting revolution, this group has become national and now has members from the East Coast to Manitoba. Because I understand the importance of socializing to help alleviate the symptoms of Parkinson’s, I have arranged many Parkinson’s group outings, including a golf tournament, and billiards and bowling nights.
When fellow support group member Steve Iseman approached me with the idea of starting a Parkinson’s cycling club, I reluctantly agreed even though I had not been on a bike for 17 years. Steve and I are Co-Captains of the Rigid Riders, a GTA Parkinson Cycling group now in its fourth season.
It is with new reluctance that I hit the road with my wife, in support of Jim and Steve’s ride. I will be chronicling the journey with videos, pictures and blogging. I have a lot of experience talking to people with Parkinson’s and am looking forward to hearing the stories of more people and how they live with Parkinson’s. I will also ride for exercise and am hoping to accumulate between 150 to 200 km/week during this journey.
Mike and I have been married for 38 years. I am the founder of the real estate law firm, Bliss & Richards-Loghrin in the Beaches neighbourhood of Toronto. I have been a strong supporter of Mike filling the role of caregiver and co-host for various fund raising and social events. When Mike came home one day, chuckling at Jim and Steve’s crazy idea of cycling across Canada. I said, “That sounds like an adventure and a good cause, I’ll drive.” Mike stopped chuckling.
I am the lone Caregiver traveling with three people with Parkinson’s. If patience is a virtue, I hope I can be the most virtuous person on the face of the earth.