Molly Cupka is a climber and founder of the organization Up Ending Parkinson's, a nonprofit that teaches people with Parkinson's disease to rock climb. Parkinson's is the second most common neurological disease behind Alzheimer's and rock climbing provides a ton of health benefits including balance, grip strength, and mental acuity. For the climbers who Molly trains, there's another benefit that is harder to quantify, community and connection.
Molly Cupka is a climber and founder of the organization Up Ending Parkinson's, a nonprofit that teaches people with Parkinson's disease to rock climb. Parkinson's is the second most common neurological disease behind Alzheimer's and rock climbing provides a ton of health benefits including balance, grip strength, and mental acuity. For the climbers who Molly trains, there's another benefit that is harder to quantify, community and connection.
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Molly Cupka:
He couldn't even talk and articulate, but the person belaying was like, "He's just happy." Afterwards, he calmed down and he is telling me through tears still, he's like, "I just never thought I would be able to do something like this. And I can't believe I just did that." And it makes me appreciate climbing as a sport so much because it really gives people just a confidence and the feeling that they can do anything.
Shelby Stanger:
Molly Cupka is a climber and founder of the organization Up Ending Parkinson's, a nonprofit that teaches people with Parkinson's disease to rock climb. Parkinson's is the second most common neurological disease behind Alzheimer's. The cause is unknown, but scientists believe it stems from a combination of genetic and environmental factors. Rock climbing provides a ton of health benefits for people living with Parkinson's. It helps them with balance, grip strength, and mental acuity. For the climbers who Molly trains, there's another benefit that is harder to quantify, community and connection.
I'm Shelby Stanger, and this is Wild Ideas Worth Living, an REI Co-Op Studios production brought to you by Capital One. As the director of Sportrock Climbing Centers in Alexandria, Virginia, Molly Cupka is responsible for hiring staff, doing payroll, fixing leaks, pretty much everything that comes with running a small business. 10 years ago, her role at Sportrock unexpectedly expanded when she got an email from a man with Parkinson's who wanted to try climbing. Molly was curious. She had studied neuroscience in college but didn't know a lot about the disease itself. Little did she know that one email would lead her to create Up Ending Parkinson's, an organization that has changed countless lives.
Molly Cupka, welcome to Wild Ideas Worth Living. Excited to talk to you today.
Molly Cupka:
Oh, thank you so much for having me. I'm excited to be here.
Shelby Stanger:
I want to talk about Up Ending Parkinson's because it's an organization that you started. I'm truly curious, how did you come up with this idea to start an organization that combines your love of climbing with helping people with Parkinson's?
Molly Cupka:
Yeah, so I discovered probably more in high school that I really liked neuroscience, so I was studying psychology in college and then I started taking some neuroscience classes. I remember the first one I took was drugs in the brain. It was mostly pharmacological drugs, not like illicit drugs, but they did go into that too, and it was just crazy to learn about how they affected your brain and mimicking neurotransmitters and stuff.
And I became pretty obsessed with it. And then that just grew into an obsession about neuroscience in general. And so then when somebody reached out, and at the time I think I was the director when the person reached out, it was 12 years ago with Parkinson's, I was like, "Oh, this is a neurodegenerative disease. I don't know a lot about it, but I'm really excited to learn about it," and climbing I've always thought of was a pretty fascinating sport because of how much your brain works while you climb. And so I was very interested when he reached out and eager to work with him. And then I kind of dove in really deep and learned a lot about Parkinson's and about the therapies used for Parkinson's, and it just made so much sense to me that climbing would be such a good therapy that I couldn't believe nobody was doing. When I Googled it, I found nothing and I was like, "Wait, what?"
Shelby Stanger:
Okay, so for people who don't know much about Parkinson's, can you describe it for us?
Molly Cupka:
So there's four cardinal symptoms that they generally say, "If you have one of these four things, then we could test you for Parkinson's." And that's tremors, which is the one everybody knows about and hears about. Not everybody who has Parkinson's has tremors. Balance is another one, having balance issues, stability issues. Stiffness is another one being really just stiff, unable to move joints as well, and slowness, slowness of movement.
And it's usually little things that people start noticing when they're getting diagnosed or before they have their diagnosis like trying to tie your shoe and that's hard or trying to whip an egg and your hand won't move in the way that it used to be able to move. But the symptoms, so once you start noticing those symptoms and people go get tested, usually all of a sudden it dates back 5, 6, 7, 10 years that you are like, "Oh, that was Parkinson's too. Oh, that was Parkinson's," because there's a lot of non-motor symptoms that occur with digestive system and sense of smell and REM sleep behavior disorder, that one's a big one. There's a whole list of depression, anxiety affecting the dopamine in your brain, so that's a lot.
Shelby Stanger:
So why did you think climbing could help it?
Molly Cupka:
One thing is with Parkinson's, they say that you're getting really small like your voice gets small, your body kind of curves in on itself and you move slower and you don't have much range of motion. And all of those things obviously affect balance and weight shifting. And so then you think about climbing and it's almost like a therapy for all those things. So with Parkinson's, they suggest you do all these different types of therapy, but with climbing you're doing big movements with your arms and your legs, you're doing a lot of weight shifting, a lot of balance work. It takes a lot of effort and a lot of strength, and it's almost meditative.
You're on this wall and all you're thinking about is climbing. You're also trying to map out the climb in your brain and then get your body to do what your brain wants it to do, which is just all of those things are things that would help somebody with Parkinson's. And the prescription that they have out there for people with Parkinson's for exercise is doing balance exercises, doing cardio exercises, doing stretching exercises, mobility things, and you really get... and strength obviously, but you really get those all with climbing. So you look at that list of things they're saying you have to do, and it'd be hard to fit in time to be able to do all of those things, but if you're climbing, you're actually doing them all together.
Shelby Stanger:
Okay, so back up. Who called you that had Parkinson's and wanted to climb, and how were you the one who answered that phone and then decided like, "Yes, I can help you come into our gym"?
Molly Cupka:
His name is Jon Lessi n and he is awesome. He has given me his permission to use his name from now to the end of time. We're very good friends. He emailed Sportrock. I think he probably emailed info@sportrock.com, which I have been answering that email since the beginning of time as well. And so I got the email and at the time he had inquired about doing a private lesson and I was the one in charge of private lesson programs. And so I said, "Sure. When do you want to come in?" And so we started right away and he was a doctor and anesthesiologist, and he had retired just before he started climbing. But when he was diagnosed, I think he was 38 when he started climbing with me, I don't know, mid to late forties, and he was very adamant about doing something that was fun.
Shelby Stanger:
So what was that first time when John came in and tried climbing with you?
Molly Cupka:
It was very fun. He's hilarious and very outgoing and we had a blast working together. The first time he came in, I wasn't super knowledgeable yet. I knew a lot about climbing, so I was like, "Oh, I can teach you climbing." And it was very evident after he'd come in for a few weeks how much better he was feeling overall. And we were kind of just talking about it. We were like, "We got to tell people about this." And he let me know about a local Parkinson's nonprofit, and I went to one of their symposiums, and so they have a symposium where people with Parkinson's can go and learn about stuff in a stadium style room, and then they divide it out where doctors and students go to the other half.
And so I signed up to go to the doctors and grad student side just by the fact that I was a rock climbing instructor and I was like, "Oh, I want to learn with them." And so I remember going in and everybody I met was getting a credit for some class or was a doctor, and they're like, "What do you do?" I'm like, "Oh, I teach rock climbing." But it was a blast and we learned so much because we essentially took an all day crash course on Parkinson's and just deep dove into it. And after that I was like, "Oh, this is the exercise for people with Parkinson's. I need to tell people about it."
Shelby Stanger:
Molly and John both started spreading the word about the benefits of climbing for people with Parkinson's. Molly even went to conferences and set up tables, but it was pretty tough to convince people to try rock climbing. It's understandable. The idea of doing something so physically and mentally challenging on a wall can be daunting when you don't have full strength or control over your body. But over the next couple of years, Molly and John were able to assemble a small group of climbers who trained together weekly.
They started with five people who called themselves The Fidgety Five. Then as they grew, they became The Shaky Six. This crew slowly continued to expand and formed the first Up Ending Parkinson's group. Today there are 15 chapters around the country with more than 150 participants. When we come back, we'll hear from a few folks who climb with Up Ending Parkinson's Plus Molly talks about the latest research she's conducting.
Over a decade ago, Molly Cupka started teaching rock climbing to people with Parkinson's. She was always interested in neuroscience and quickly became fascinated with how climbing could help with this degenerative disease. Molly immersed herself in the research and established an organization called Up Ending Parkinson's. The Up Ending climbers are between 40 and 90 years old. They include people who've been recently diagnosed and people who've had Parkinson's for decades, no matter their age or the severity of their disease, climbing has had a huge impact on the members of this group.
Do you have any other stories of participants who've been with Up Ending Parkinson's and how their life has changed?
Molly Cupka:
Let's see. We have so many cool participants. I'd say Teresa, she's one of our newer climbers, I think maybe three years she's been with us and her daughter bought lessons from me for Mother's Day for her mom, and her daughter was and is a climber, and she thought that her mom should try climbing. She heard a podcast that I'd done and was like, "Oh, we should get mom this thing." And so she reached out to me. I did a lesson with Teresa and I brought in another one of our climbers to do the lesson with her. So sometimes those big group sessions, if somebody who is recently diagnosed can be a hard thing for people to wrap their mind around, "I want to show up, and there's going to be 20 people here." So she preferred to do a private session, which I totally understand, but I wanted to bring in one person from the group to kind of inspire and show her.
And so Teresa had a rough first session in there. She was in tears a lot and partially because she felt like she wouldn't be there if she didn't have Parkinson's, and I don't think she meant that in a nice way. I think it was just, "I have to be doing this because I have Parkinson's," and there's just a lot of depression and anxiety that goes along with it. And you could tell she was feeling that a lot and she made it to the top of the wall her first day after some coaxing, and she did so well. It was really, really fun to see.
And then just watching her change and her grow as she started climbing was just unbelievable. It was like day to day you could see the change in her demeanor, her posture, her smile, the people in her life telling her things, her doctors telling her things that have improved, and she started doing a lot of other things to help with climbing. So she started swimming and doing all these Pilates, and she just really grew a lot. And she always says that climbing gave her a purpose, and I find that really a cool concept. It gave her a reason to get up in the morning and to do things she does. So her story always makes me smile.
Teresa:
I am Teresa Bennett and I am 68 years old. I have been climbing for three years. Climbing with Up Ending Parkinson's is like belonging to a family. Climbing changed my life. It gave me a purpose, a place to be me, a group of new friends who understand what I'm going through, and that coach is one of my best friends. This new passion came at a critical time. Shortly after I was diagnosed with Parkinson's and rock climbing has improved my symptoms. Most of all, the supportive and fun community is a source of joy in my life. Climbing has kept Parkinson's at a distance. My tremors have decreased, my hands and grip are stronger, and I am more sure of my feet. Plus, climbing makes me even happier. As long as I have rock climbing, I will be all right.
Shelby Stanger:
Here are John and Peter, both of whom joined Up Ending Parkinson's in the past year.
John:
My name is John Rosiak and I have been rock climbing since January of this year. I was diagnosed with Parkinson's disease at the end of 2023, and immediately looked at what I could do to better understand the disease and what I could do to try to keep it at bay. I signed up for a number of different studies, one of which was a study sponsored by Up Ending Parkinson's on whether and how rock climbing was a form of exercise that could help people with Parkinson's disease.
I never climbed before in my life. After climbing for several months for the study, I have to say I don't like rock climbing. I love it. Without being too dramatic, I can say that rock climbing has changed my life by giving me something new to help me in this journey I find myself on now. After every climbing session, my body feels tired and sore, which frankly I feel all the time with Parkinson's disease. But I liken that feeling to those good tough workouts you get playing sports. Walking out of the Sportrock facilities where I climb, I just feel better. That natural dopamine my brain is short of must be kicking in. Because of the climbing, my balance has improved. I walk with greater confidence. I feel stronger. My attitude toward life is positive and focused. When I climb with Up Ending Parkinson's, I forget about the disease.
Peter:
I am Peter Pocock. I started climbing with Up Ending Parkinson's almost as soon as I learned about it. That was about 10 months ago. Shortly after I turned 78, I'm never going to stop. My diagnosis put a name on symptoms that had been getting worse for years. I finally had to give up the forest hiking and rock scrambling that I'd done for decades everywhere from the Sierras to the Adirondacks. That was a huge loss.
Turns out that hole in my life was exactly what Up Ending could fill, and a lot more. Working on those walls has me in better physical shape than I've been in it for 20 years. And I'm finding some new good friends too. Got to say, nobody gets it about Parkinson's as well as folks that live with it. Of course, nobody can know the way that my Parkinson's will go or how fast, but I know that most days I wake up in a pretty good mood, particularly when I'm going to climb that day. And I know that when I'm bending and stretching and balancing and squatting just in the ordinary course of the day, it's because I'm climbing. And like I said, I'm never going to stop.
Shelby Stanger:
What started as a small group of five climbers in 2012 became a full-blown registered nonprofit in 2022. As the organization has grown, Molly has been particularly interested in researching the impact climbing has on people with Parkinson's. This year, she's taking this work a step further and conducting her first ever study. So are you guys conducting studies with any of the participants or participating with? I mean, you're in kind of a hotbed of research. You're right near John Hopkins and a couple of really good research universities. Are you partnering with anybody to do scientific studies within your gym, within your nonprofit?
Molly Cupka:
We are. So I'm actually officially a researcher right now, which is pretty crazy and cool. And so I am doing a study with two other researchers. There's three of us on it. We're about two years into the planning part, but almost a full year into the actual study has been running. It's with Marymount University Center for Optimal Aging. And so we got our research team together and we talked for about a year, weekly about how to do the study and what we're looking for. And then here we are. We're almost a year into doing the actual study right now, and it is wrapping up.
Shelby Stanger:
Can I ask you what it is? What's the study? What are you trying to figure out?
Molly Cupka:
The subject of the study is the effects of rock climbing on people living with Parkinson's disease, but we're looking at primarily the motor effects and secondarily, the psychological effects. From anecdotally, from my experience, I see the psychological effects very easily because I know people and I talk to them and they tell me how they feel and what climbing's done for them. And so that one to me was kind of like a no-brainer. But I also see these people all the time and they tell me they're feeling better physically, and they're like, "Oh, my doctor says I am." And I'm like, "That's so cool. I want to see it for myself." And so a lot of the tests we're using are testing, mobility and balance and reaction time and all sorts of things that would be applicable to everyday life.
Shelby Stanger:
How has Up Ending Parkinson's evolved and where are you at today?
Molly Cupka:
So we have a lot more locations. Currently, we have 11 locations. We have several in Virginia because that's where I'm from, and then it's easier for me to connect with those gyms. So several in Virginia, we have a couple in Ohio, we have one in New York. We just started one in Boulder, Colorado. We're starting one in Washington state, so it's growing. That's what's happening right now is that a lot of climbing gyms are wanting to do an Up Ending program at their gym, and that's probably one of the big things. The research is another big one that was kind of on my bucket list of things I really wanted to do for a couple of reasons. One, to show doctors that this is a good thing to tell their people with Parkinson's to do, another so people with Parkinson's are like, "Oh, I can do this." And then to maybe one day is a dream down the road to get insurance to cover something like this or medical coverage in some way. And so right now we're just expanding a lot and doing research. Those are the two big things we're doing.
Shelby Stanger:
That would be so cool if a doctor got his prescription pad out and was like rock climbing, and then you submitted it to whatever your insurance anthem is, and then they covered it. It seems like it would be so much less expensive than just drugs. Up Ending Parkinson's has found a way to help others take care of themselves, have fun, and make new friends. Building a nonprofit is challenging, but for Molly, this work is more than worth it, and she wants to keep sharing the message.
If you want to support Molly and the climbers or learn more about what they're up to, check out upendingparkinsons.com. That's U-P-E-N-D-I-N-G-P-A-R-K-I-N-S-O-N-S.com. A huge thank you to Molly and the Up Ending climbers, Teresa, John, and Peter for contributing to this episode and sharing your story. Wild Ideas Worth Living is part of the REI Podcast Network. It's hosted by me, Shelby Stanger, produced by Annie Fassler, Sylvia Thomas, and Sam Peers Nitzberg of Puddle Creative. Our senior producers are Jenny Barber and Hannah Boyd. Our executive producers are Paolo Mottola and Joe Crosby. As always, we love it when you follow the show, take time to rate it, and write a review wherever you listen. And remember, some of the best adventures happen when you follow your wildest ideas.