Mark Black
Mark Black shares his remarkable story of resilience, becoming the first person in history to run a marathon with someone else's heart and lungs.
More Than Our Story
The Rigid Riders
Steve Iseman and Mike Loghrin are the co-founders of the Rigid Riders, a cycling club in the Greater Toronto Area for people with Parkinson’s. They have expanded their initiative nationwide with a tri-coastal ride called the Spinning Wheels Tour, which brings together others with Parkinson’s, demonstrates the benefits of exercise, fosters a supportive community, and shows others that they are not alone.
Highlights
On Parkinson’s disease:
Steven Iseman: Parkinson's is different with every person. There are maybe three dozen major symptoms that you can get. Usually, you only get a handful of them, and it seems to be different in every person.
Steven Iseman: Both Mike and I got it as Young Onset Parkinson’s Disease (YOPD), which is when you get it before the age of 50. It's considered on the rarer side. So instead of winning a lottery, we won this.
Steven Iseman: It affects, frankly, so many elements of our lives, both with physical limitations and cognitive limitations. There's really almost nothing that's left untouched. That said, we have found life can go on.
The first symptoms they noticed:
Steven Iseman: For me, it was typing. I was having considerable difficulty typing all of a sudden, and I assumed it was some sort of nerve damage. So, I went to a neurologist and got bad news.
Mike Loghrin: Mine was a twitch in the finger. I have Tremor-dominant Parkinson’s Disease (TDP) type Parkinson's, which is very common.
Mike Loghrin: Typically, when a Young Onset person (gets) diagnosed, you've had the disease before your symptoms showed up, you’ve had it for about 4 or 5 years at least… So you're starting to get these weird things like a finger twitch, or your toes going numb for some reason, and it turns out to be Parkinson's. Mine was found by my physiotherapist. We were working on my wrist, which had cramped up. She said it wasn't responding, so she sent me to the neurologist, and that's how (i got) diagnosed.
On why the number of Parkinson’s cases is rising:
Steven Iseman: Nobody knows why. Not only (are) the numbers increasing, but the rate of afflictions is increasing, and to make it even more worrisome, Canada is a mystery hotspot. So the why is really the sort of thing that keeps us up at night.
Mike Loghrin: They’re figuring that pesticides could be linked to chemicals from industrial (activities) - like metal making.
Mike Loghrin: There's still no cure. There's still no actual diagnosis for it. Until you're actually dead and they check your brain cells to confirm it.
On the Canadian Health Care System:
Steven Iseman: To properly diagnose Parkinson's disease, you need to consult a movement disorder specialist, which is a special subset of neurologist. What I've discovered is that even a typical neurologist isn't necessarily equipped to diagnose Parkinson's, because it's based on interpreting your behavior and your presenting symptoms to make a determination whether those symptoms are, in fact, Parkinson's. These movement disorder specialists are rare, and it can typically take one or even two years to get an appointment to see somebody. And that's after your symptoms have already presented to the point where it now begs the question, what's causing this? Which, as Mike was saying, could be 4, 5, or even 10 years after you've already contracted the illness.
Steven Iseman: I think Canada is about to go through a rush of diagnoses, and it has a lot to do with a biomarker that they recently discovered. It's coming near term when that biomarker is going to be available as a blood test… When it is the ten years or so of pre-diagnosis, when somebody doesn't even think to go see a doctor, and all the people who have symptoms but don't have an educated family doctor... When you put expanded awareness and this blood test together, I think that the current rate is going to explode.
On supporting people with Parkinson’s:
Mike Loghrin: People with Parkinson's lose dopamine… So that leads to depression as well as all these other symptoms we have to deal with Parkinson's.
Mike Loghrin: One thing we do through our work with The Rigid Riders is bring communities together. Bring them out, get them out there moving around, build up some new dopamine just by getting out there and pedalling. That idea of community really helps with how people can go into depression.
Mike Loghrin: The community we find in ourselves is just getting together and telling each other, “You're not alone”, and fighting it out.
On The Rigid Riders:
Steven Iseman: It started with a cycling event, a charity event to raise funds for Parkinson's. I thought, 'Boy, this is really well-organized, there are a lot of people here who are supporting us,’ and as I looked around, I noticed I’m pretty much the only one here with Parkinson's… I'd done some investigation and discovered that exercises can be really beneficial for symptom mitigation with Parkinson's… I looked around for organizations or activities that were appropriate for somebody who was on the young side, pretty active, and sports-minded. I found that most of the existing options were tuned to somebody either further along in age or further along in the ailment than I was. That's when Mike and I put our heads together and started thinking about the things that didn't exist in our environment to help ourselves and our friends, but really should.
Steven Iseman: There was one hiccup before we got it rolling. Which, for me, was that I was in hiding, which is a pretty common course that people tell nobody about their diagnosis, and do what they can to hide their symptoms, which I was doing for five years… To go out into the world and try to connect with people and talk about the benefits of exercise meant that I had to decloak and tell the world, “Hey, this is what I'm dealing with.”
Mike Loghrin: We started up doing it on Sundays, basically in the GTA (Greater Toronto Area), utilizing the GO (train) system. We’d go out to Hamilton, we’d go out to Whitby, and do a ride around there with friends. We’ll have anywhere from 2 to 5 people; sometimes it’s right up to 30 people.
On The Spinning Wheels Tour:
Mike Loghrin: In 2022, Jim Redmond, who ran Pedaling for Parkinson's up in Prince Edward County… talked to Steve about wanting to ride across the country… (before he finished his sentence, Steve said, “I’m in”.
Mike Loghrin: We started in Victoria, B.C., Steve and Jim rode all the way across to Saint John's, Newfoundland, that year. It was on a shoestring budget, planning our route as we went. But the connections and the friends we made there, the people that came out, joined us at The Rigid Riders in Collingwood that year in support of it all. It just showed us that at the end of it all, we (were) successful at opening up people to coming up and talking to us about it.
Mike Loghrin: When you meet someone (else) who has it, they know what you're going through, they’re kindred spirits, and all of a sudden you’re just laying everything bare because there's no real reason to hide stuff.
Steven Iseman: We discovered two significant things. One is the sheer number of people who had nobody to talk to about this, and were suffering alone, in the silence, or without counsel or support of any sort. And the second thing was that they wanted to be found. Us showing up in their community was a chance for them to rethink why they were being quiet or why they were not being open about it. It became almost a daily event where… we'd have a chance meeting with somebody.
On their most memorable moments touring across Canada:
Mike Loghrin: I can't pick one. Just the opportunities and the fun we've had, the places we stayed, the people we've met.
Steven Iseman: I have a representative story that summarizes why we're doing what we're doing. On our trip to Inuvik and then up to the Arctic. We were in very remote territory - a little town called Eagle Plains, population of nine. We stopped there for dinner and a beer (and met a guy who found out he had Parkinson’s two months prior). In the most remote location I've ever been, there was a role for us, and I see a role for us every day.
What these initiatives taught them about themselves:
Mike Loghrin: I'm just here to enjoy myself and what we're doing. You get out there and talk to people…Just doing all those things inspires me and all those people that we've met all along the way).
Steven Iseman: The face of Parkinson's is a lonely one. People tend to be shut-ins. They can develop a mask face that doesn't reveal emotion. The world tends to react to that in a not-helpful way. There are all sorts of reasons why people tend to stay at home and tend to stay secluded. So, Mike and I are part of a network of people, frankly, who are more positive-minded about life with Parkinson's. It's not the end of the world. It's not the end of our lives.
What they would say to people who have just been diagnosed:
Mike Loghrin: It's not a death sentence. It's just a lifestyle change… If you work hard through exercise, take your medications, listen to your doctors, get in the community. Whether it's a support group or an exercise group, every time you get a couple of people with Parkinson’s together, it’s a support group.
Steven Iseman: We all start exactly the same way, in a doctor's office, receiving bad news. You walk out feeling vulnerable and feeling like things are in decline. But actually, nothing happened that day. You are the exact same person that you were when you went in. The only thing that happened was you were robbed of your life plan. Something that you sketched out for yourself… But that life, that life plan was always an illusion. So, now there's something new. Now there's something new that they have to work into their lives. And they think frequently that this is too big, too much for them to handle. It's not. Take a bit of time to feel sad, a bit of time for despair, and then put it away and start incorporating this new reality, find its edges, and overcome your fears and chart a new course.
The Rigid Riders
A GTA Parkinson Cycling club
We are the Rigid Riders.
We are a group of people living with Parkinson’s Disease who have chosen a different path and decided to fight back.
We cycle. Cycling has proven health benefits for people living with Parkinson’s Disease.
Our members cover the full range of cycling abilities and many of us have not cycled since we were kids.
So, to the list of reasons why you are not cycling now, we say:
1) Make the time. You are experiencing change and you must adapt.
2) It will hurt more if you don’t manage it. Muscle rigidity, balance, and flexibility may be at risk if not addressed now.
3) It’s free to join. We help with equipment, volunteer coaching and optional spin classes (at a cost).
4) We are a supportive team, and we understand what you are going through.
5) PD can subdue your motivation. Together we motivate each other.
Our goal: complete a 40-kilometer route in a Pedaling for Parkinson’s Event later in the year.
In preparation, we will train as a team, including indoor spin classes through the winter and outdoor cycling routes in the spring. Spouses and/or care partners are welcome to join.
We are currently most active in the GTA. We are looking for eager organizers in other areas. If you think that you may be that organizer, let’s talk.
To find out more or to inquire about joining the team, email us.
Don’t delay; we are stronger together, and we want to hear from you.
Spinning Wheels Tour
Spinning Wheels is pleased to announce our collaboration with Parkinson Canada. This year, we are the Pedaling for Parkinson’s Spinning Wheels Tour. We will continue to raise funds from across the country and leave it in the communities we pass through to help support programs for people living with Parkinson’s and their families. We will ride all ten provinces and visit three coasts, as we continue to meet people and raise awareness of Parkinson’s, the benefits of exercise in alleviating symptoms and help build community. You are not alone.
Parkinson Canada
We are working hard to improve the lives of the more than 110,000 people living with Parkinson’s in Canada.
Our mission is bold and unwavering:
To empower and inspire people living with Parkinson’s and their care partners to thrive and live courageously.
Through community support, advocacy, and research, we encourage others to see a diagnosis not as a dimming of light, but a spark for a new beginning.
Daniel
Daniel is an extremely curious person, a wealth of random knowledge and facts. Extremely passionate about a vast array of interests ranging from health to history, science to athletics, everything culinary and the list goes on. Trust us, you would want to be on his team for Trivial Pursuit.
Daniel is also years into his battle with brain cancer. He experienced a seizure while on a Zoom call at work in late 2020 and quite literally, his life changed within minutes. After his operation he started to talk about his story but had always known it was more than just him. From then, More Than Our Story became a PROJECT that has evolved into the starting point it is today.
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