Josie & Joe in Tandem vs. Multiple Sclerosis
SHOW NOTES
Expert Guests:
Mary A. O’Neal, MD: Brigham and Women’s Hospital
Director of Women’s Neurology Program
Notable Publications:
Jacob Meyer, PhD: Wellbeing and Exercise Lab, Twitter
Principal Investigator of the WellEx lab at Iowa State University
Expert on the neurobiological effects of exercise on depression
Notable Publications:
Resources:
Six months ago, Josie was bedridden with a flare-up of the Multiple Sclerosis (MS) she has been battling for a decade alongside her husband Joe and with some help from their much loved custom tandem bike. Over that same decade Josie and Joe have logged over 10,000 miles and raised $100,000 for research on MS, a disorder where the immune system attacks the nervous system and triggers a loss of strength and muscular control.
Would this latest flare-up permanently sideline this avid cycling couple?
“When this flare up happened, I could not move a muscle. I couldn't lift anything,” recalls Josie. “Joe will say he was feeding me in the hospital ‘cause I couldn't lift the fork to my mouth.”
“And when you were flat on your back and said you wanted to bike again,” recalls Joe, “I was skeptical but hopeful.”
Six months later, we cycled with Josie and Joe on their tandem bike and heard about the uphill journey back from that flare-up, as well as their ups and downs since our first MBO interview at the National MS Society Bike Maine Getaway in 2019.
Expert commentary is provided from two perspectives. First, on the neurological aspects of this condition, which affects more women than men, from Dr. Angela O’Neal, Director of the Women’s Neurology Program at the Brigham & Women’s Hospital in Boston. And second, on the nature of exercise with MS, from Dr. Jacob Meyer of Iowa State, who suggests we broaden our understanding of beneficial activity to include improved mood and motivation.
Tune in for an informative and inspiring story of perseverance and marital teamwork against the steep challenge of Multiple Sclerosis.
“We’ve been dealt this hand and have to do our best with it,” remarks Joe, with Josie adding, “I’m so grateful we can do what we can do.”
My Body Odyssey is a Fluent Knowledge production.
Original music by Ryan Adair Rooney.
What's your body odyssey? Let us know.
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Josie
When this flare up happened, I could not move a muscle, I couldn't lift anything. I couldn't – I mean, Joe will say like he was feeding me in the hospital, because I couldn't lift the fork to my mouth. And then I said, ‘you know what, I have to get back.’
Robert Pease (co-host)
Josie has Multiple Sclerosis, or MS, a disorder where the immune system attacks elements of the nervous system.
Joe
When you're lying in bed, couldn't move a limb and you said, ‘Yeah, I wanna go back on the bike,’ I was skeptical but I was hopeful.
Valerie Wencis (co-host)
That’s Joe, Josie’s husband and, nearly as important, her tandem biking partner. Over the past ten years they have put over 10,000 miles on their adaptive tandem bike and raised $100,000 for MS research.
Robert Pease (co-host)
Which made Josie all the more determined to work herself up from those hospital and rehab beds and back onto her tandem bike seat.
Joe
And then when we first tried it, we literally went around the block, and then we took baby steps five miles and went our way up because it's a big thing from being completely immobile in a hospital bed to being back on a bike.
Robert Pease (co-host)
I’m Robert Pease and it’s Josie but also Joe’s body odyssey on this episode. They’re facing the challenges of MS in tandem, on and off their bike. And Joe has the tattoo to prove it.
Joe
So I got this for Josie and you know, it says, your battle. I forget what it says. Your battle is my battle.
Valerie Wencis (co-host)
I’m Valerie Wencis, really enthused to share this story of exceptional spirit and devotion. Which is also somewhat of a love triangle when you include that tandem bike they ride wherever and whenever possible, even in the depths of the Boston winter.
Joe
We try to be safe, you know, if we know it's icy, we won't go out. We have seen some other crazy people out there when it's in the twenties for sure.
Josie
We just give thumbs up.
Joe
But not, not the single digits. I think we're the only ones out there in single digits.
Josie
But he is the reason why I can do what I do.
Robert Pease (co-host)
Let’s go back to where we first met Joe and Josie, the Bike Maine Getaway put on by the National MS Society in Biddeford, Maine three years ago.
Valerie Wencis (co-host)
It’s where we observed the huge range in severity of MS cases: some riders have been diagnosed but have no symptoms and are riding a full hundred miles. Others with severe symptoms are unable to ride, but are there to support the cause.
Robert Pease (co-host)
Josie, at that time, is somewhere in the middle of the MS pack. She’s having trouble walking and can no longer safely swim but is still putting in a full day on the bike.
Robert Pease (co-host)
Well, welcome. And thank you for sitting down with us. How far did you ride today?
Josie
We rode 75.
Robert Pease (co-host)
Wow. And you have a special bike.
Josie
We have a tandem bike. Helps me ride because otherwise I would not be able to do the ride by myself.
Valerie Wencis (co-host)
And in this first meeting we learned about the early stages of Josie’s MS odyssey.
Josie
I had symptoms from when I was 15. So they kind of, I wanna say they knew it was dormant, but there was nothing that could be done if nothing's going on. Then there was no preventative care or medicine. So just three month checkups with the doctor and everything. And then once I had my kids, my mobility, my balance, everything just kind of went down and then I went to the doctor and they said, you have MS. And it wasn't even a surprise. ‘Cause I'm like, well, that's what they told me. It was back then. But so I've had it since I was 15.
Robert Pease (co-host)
There are many mysteries about MS. Such as why it affects more people in colder northern rather than warmer southern climates, why the immune system attacks the nervous system in the first place, and how the disease can go into remission for so many years.
Valerie Wencis (co-host)
We reached out to Dr. Angela O’Neal for some insight into MS and the neurological damage that often results. She’s Director of the Women’s Neurology Program at Brigham and Women’s Hospital in Boston.
Dr. Angela O’Neal
MS is an autoimmune disorder, and women have autoimmune disorders much more frequently than men. So women have MS, women have lupus, women have neuromyelitis optica. Autoimmune conditions are much more common in women because of differences in our immunologic system.
Robert Pease (co-host)
We also asked Dr. O’Neal about exercise for MS patients like Josie.
Dr. Angela O’Neal
I think the benefits of exercise are that first of all, it keeps your body in as good shape as you can possibly be in, because MS can cause weakness and balance problems and all kinds of neurologic problems. In addition, MS and depression are hugely co-linked, and fatigue. These patients are having to work harder to do every single thing that we take for granted. And so exercise has multiple benefits for patients with a chronic neurologic disability.
Valerie Wencis (co-host)
Which points to the importance of that third member in this marriage: the tandem bike that Joe brought into their lives about ten years ago, first from Craigslist when Josie was no longer able to ride herself. Then five years ago, once really hooked, they had a bike created just for them by the custom tandem innovator, Da Vinci Designs.
Josie
So when he mentioned the tandem, I said, I've never been on a tandem, but I'll give it a shot. And then, right away, we just kind of hooked in. And so it allows me to keep my mobility and it loosens me up. So I feel good. I mean, I felt great after today, depending on the weather, but still today was a great day. It keeps me moving, which I think is so important.
Joe
We found this company in Colorado. DaVinci makes a fantastic bike and what it allows is independent pedaling, so she can stop pedaling. I can keep pedaling, I can stop pedaling. She can keep pedaling. So it's great. It just really works out well. I actually have it right now coupled, so I actually put them back together. So we're both peddling in sync. But I have the ability to take that off if I want to.
Valerie Wencis (co-host)
Three years pass after that first meeting with Joe, Josie, and their DaVinci tandem. The COVID years during which the National MS Society rides, like many other events, weren’t being held. We’d been wondering how they are doing – was Josie in the high-risk category for COVID since MS is related to the immune system? And were they still able to get out for their rides?
Robert Pease (co-host)
Then, in the summer of 2022, I ran into Joe at another cycling event where we made a plan to meet at their house, go for a ride, and catch up.
[Cross-talk]
Get in here. Come on. Come on. Well, thank you for having us. You come on in. Come in. Yeah. Well, I'll get my bike ready. We meet, drove back. We'll come out this way.
Valerie Wencis (co-host)
Everyone heads out to the driveway and the ride preparations begin. And preparing to ride, in fact even the simple act of getting dressed with MS, is a challenge all by itself, even with skillful assistance.
Joe
Do you want the heavier jacket?
Josie
No, that one's better.
Joe
Mine? You sure?
Josie
Right. The whole prep is amazing. Thank you. I know it's come to the point where I need more assistance getting ready, but it's worth it.
Valerie Wencis (co-host)
Joe helps Josie with her jacket and helmet and in getting on the bike. She now wears braces to control the spasticity in her legs.
Joe
And her legs tend to – she doesn't have control, so they start buckling. So we found that this, with her braces, really keeps her in.
Josie
Because my ankles would hit the chain, and I would be bleeding by the time I got home.
Joe
So, she wouldn't say anything. She'd say, ‘No, it's fine.’ It's like Monty Python, ‘just a flesh wound.’ You know, she's bleeding. I'm like, are you all right? But that's how much she loves being on the bike that she can put up with that.
Robert Pease (co-host)
Yeah, let's go easy on the bleeding…
Joe
Alright. Ready when you are.
Josie
I’m ready.
Valerie Wencis (co-host)
Finally they are on the road, Joe, a big powerful guy in front, and a very petite Josie right behind.
Robert Pease (co-host)
There’s a fair number of cars and motorcycles out on the road this windy Saturday morning.
Valerie Wencis (co-host)
But Joe’s an experienced tandem pilot. And, without bleeding of any kind, they ride over to the elementary school where Josie taught special ed for many years until her condition forced her to retire.
Josie
First day of school we’d come here. Kids would go up and I would go around and go to work.
Robert Pease (co-host)
And it becomes obvious on this ride that Josie’s MS has progressed in the three years since our first meeting at the Maine Getaway. She’s not able to contribute as much on the tandem, though she does her best to help Joe, especially on those hills.
Robert Pease (co-host)
How are you feelin’?
Josie
Feeling good.
Robert Pease (co-host)
Good temperature.
Robert Pease (co-host)
And for most of the people we pass on the ride, it would appear Joe is doing most of the heavy lifting all out there, especially as he propels an 80 pound bike with his hundred pound wife up the steeper hills. He’s breathing hard, he’s sweating. And that’s how we tend to view exercise: big movements; straining muscles; no pain, no gain.
Valerie Wencis (co-host)
But Josie is doing some work of her own, if not as visibly. Remember, it’s only 6 months since that last flare up. And for someone who was helpless in a hospital bed last spring, this ride is not about mileage or speed or the calories burned. It’s about being able to move again. Just move her legs against the pedals. That’s the challenge and the reward.
Josie
A lot of it's in your mind too. I'm not saying in your mind like you're thinking, but you need to connect your brain to your muscles and just almost let them talk and make them focus on not just sitting there. Okay. Okay. Make my legs move. Just like connecting that nerve, the nerves that go through your body to your legs to make your legs move. Because your brain is the one that's controlling your muscles to move. So like strengthening them and connecting your brain to your whole inner body and making your muscles go and move and work for you, not against you.
Valerie Wencis (co-host)
To better understand the connections Josie is trying to make, we reached out to Dr. Jacob Meyer, Director of the Wellness and Exercise Laboratory at Iowa State University. He’s researched and published extensively on the physical and behavioral benefits of human exercise, activity, and movement.
Dr. Jacob Meyer
I think especially for people who have been able to do things differently in the past in any sort of way, MS or someone who had a different ability or or fitness level in the past, it could be really cognitively challenging to think through. Like, why can't I do what I thought I could do? Why is there this mismatch between my expectation of my body or ability and what I think I should be able to do? And that can play out in a number of different ways for people. And I think in particular, in something like MS it can be hard to come to terms with, of a potential new reality, even if it might be temporary or permanent and getting to grips with how you're gonna be able to act in the present moment. And it might mean sort of retraining the way that you think and the way that you move, and it sounds like she’s on a positive path there.
Robert Pease (co-host)
But despite the effort involved, the sheer joy Josie derives from our 8 mile ride around the neighborhood seems just as strong as from the 80 mile ride three years ago at Maine Getaway, possibly stronger.
Josie
I get excited knowing that I'm gonna get on the bike and like Joe said, like the preparation of getting on the bike sometimes holds me back. I just need to get this on so I can get on the bike. It's the anticipation. Once I'm on the bike and we're riding, I'm like, okay, we're out. We're out. So now we can enjoy this ride. We get home and I'm like, oh. It's like that high is there and I feel so much better. I feel well enough to get my day on the right path.
Valerie Wencis (co-host)
Which had us wondering. Could the benefits of exercise be powerful even without the physical exertion? Again, Dr. Jacob Meyer.
Dr. Jacob Meyer
Yeah, so the question becomes, well what's the mechanism, or what's causing that runner's high or cyclist high in the first place? And one way of thinking about it is that, well, it's gotta be something physiological. But from something like this, in which Josie's experiencing it without that physiological precursor, then it makes you wonder, is this something more psychological that's happening that's causing it? Is it being outside with nature that we see that has consistent positive mental health benefits?
Valerie Wencis (co-host)
And do we need to think about the benefits of exercise and activity in much broader terms?
Dr. Jacob Meyer
You know, it sounds like for Josie, she's doing something together with her husband for some period of time in which they have nothing else to think about necessarily or do because they're on the bike together. Maybe that opportunity to take a time out together is the important piece. And I think that's really cool and powerful and makes it remind us that maybe the exercise, what we're doing isn't so important, but it's that we're doing it and that we're doing it in a setting that helps us feel better. That might be more important.
Valerie Wencis (co-host)
And Joe can certainly attest to the behavioral benefits Josie does get from these tandem rides.
Joe
Yeah, definitely. I think the biking high, if you will, or whatever for you, kicks in and it stays with you. To answer your question, it's before, during, and after for Josie because she gets excited about it. While she's riding, she's always fine, she's saying hi to everybody. And then even afterwards she's just in a better mood. Because like I said, she wants to get out and ride and get some exercise. And she's always been active. Exercise has always been a thing for her, so not being able to do stuff like that was killing her.
Josie
That's my therapy.
Robert Pease (co-host)
And, maybe most importantly, these rides play a huge role in their relationship, which is a remarkable one to observe, on and off the bike. And Joe has that tattoo to prove it.
Josie
That was when my kids were like, ‘you’re gonna get a tattoo??’ Yeah. Freaked out, always told them not to get a tattoo. And then you got this tattoo and they were like, ‘All right. Alright. That's okay.’
Joe
But I mean, it's just important, you know, I would think Josie would be here for me if something happened to me.
Josie
Absolutely.
Joe
You know, nowadays, we married for sickness and health, and these are the cards we're dealt and we make the best of it. You know, and we try to make the best of it, riding on bikes. We're doing whatever we can. We can't do all the stuff, everything, but we can do whatever we can do.
Josie
I’m so thankful we can do what we’re doing.
Valerie Wencis (co-host)
That’s Josie and Joe. In tandem on and off the bike in dealing with the enormous challenge of MS.
Robert Pease (co-host)
And inspiring others in the process, on charity rides, and on their regular rides about town. Thanks to Joe and Josie for inviting us along. We hope to ride again with them next season of My Body Odyssey, but maybe not at ten degrees.
Valerie Wencis (co-host)
Next up on My Body Odyssey, another story of cycling against adversity, this time not of the tandem kind. Howie is a 6 time cancer survivor who also has type two diabetes and just keeps on doing what he’s always loved
Howie
You know, it's camaraderie. It's the accomplishment, it's the scenery. It's all of that put together.
Valerie Wencis (co-host)
And also very likely helped him through his monumental odyssey.
Howie
Because of all the riding I do, they're able to hit me harder, with chemo, with radiation, when they have to.
Robert Pease (co-host)
We hope you’ll join us for that episode and share My Body Odyssey with a friend or loved one. And if you or someone you know has an odyssey with ups and downs, and rewards and challenges, please reach out via social media or through our website, mybodyodyssey.com. This is Robert Pease with thanks to our listeners from the whole MBO team. My Body Odyssey is a Fluent Knowledge production. Original music by Ryan Adair Rooney.