Parkinson鈥檚 Disease Archives - 国产吃瓜黑料 Online /tag/parkinsons-disease/ Live Bravely Wed, 14 Feb 2024 18:44:56 +0000 en-US hourly 1 https://wordpress.org/?v=6.7.1 https://cdn.outsideonline.com/wp-content/uploads/2021/07/favicon-194x194-1.png Parkinson鈥檚 Disease Archives - 国产吃瓜黑料 Online /tag/parkinsons-disease/ 32 32 How a Climber with Parkinson鈥檚 Started a Movement /outdoor-adventure/climbing/parkinsons/ Wed, 14 Feb 2024 18:05:43 +0000 /?p=2659712 How a Climber with Parkinson鈥檚 Started a Movement

A retired physician鈥檚 efforts to mitigate his Parkinson鈥檚 symptoms catalyzed a program that would turn a climbing gym into a research facility

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How a Climber with Parkinson鈥檚 Started a Movement

Vivek Puri first noticed the symptoms in 2012. Instead of hanging or swinging by his side as he walked, his arm curled inward and up, his wrist hanging right around his belt buckle. It was strange, he remembers, but subtle enough that he simply adjusted his stance and moved on.

But then the 38-year-old Northern Virginia-based businessman began experiencing more symptoms. His typing suffered. His fingers would stiffen and jam. Eventually, a neurologist diagnosed Puri with neuropathy. But, after months of physical therapy with no improvement, he found himself back in the exam room.

鈥淚 remember saying, 鈥楤y the way, I鈥檝e noticed that when I walk, my right hamstring cramps up,鈥欌 Puri recalls. 鈥淭he color just drained out of his face. I saw this visible shift in his demeanor.鈥 The neurologist immediately arranged for Puri to see a specialist.

And so, on the morning of September 27, 2012鈥攋ust 24 hours after he and his wife welcomed their third child鈥擯uri rushed to an appointment at Georgetown University Medical Center鈥檚 Movement Disorders Clinic in Washington D.C. Less than an hour later, he was diagnosed with Parkinson鈥檚 Disease. 鈥淚t was surreal,鈥 he says.

Determined to slow the disease鈥檚 progression, Puri experimented with different therapies and exercise regimens. One day, after a prolonged struggle to find the right fit, Puri spoke with his physician. 鈥淗e said, 鈥業 know a guy you need to talk to. He has Parkinson鈥檚, but he鈥檚 done so many things. He rides bikes in the Rockies and goes rock climbing, all kinds of stuff.鈥欌

The man was Jonathan Lessin, a retired physician whose efforts to mitigate his Parkinson鈥檚 symptoms catalyzed a program that would turn a climbing gym into a research facility.

***

Of the small handful of certainties and commonalities surrounding Parkinson鈥檚 treatment, perhaps the most widely understood is the critical role of exercise in slowing the disease鈥檚 progression. Not just any activity will do, however: Addressing the tremors, muscle rigidity, and neurological effects of Parkinson鈥檚 requires exercise that blends (among other things) balance, aerobics, flexibility, and strength training. This is exactly what Lessin was seeking.

Often referred to as UpEnding Parkinson鈥檚 OG, Jon Lessin (gray shirt) is a former anesthesiologist who began climbing in 2012, in hopes of mitigating the symptoms of his diagnosis. Here, he and Molly Cupka (right) approach a route during a session. (Photo: James Whitesides (@jtwphotosva))

A former cardiac anesthesiologist from Chevy Chase, Maryland, Lessin began experiencing symptoms at age 33, though he wouldn鈥檛 receive a diagnosis for another five years. He retired soon after, concerned about the risks his condition posed for patients.

Like Puri, Lessin struggled to find an exercise that not only worked, but that he enjoyed. The standard recommended therapy bored him to an extreme. Trapeze lessons proved too painful and risky. He enjoyed hiking and biking, but often found himself exhausted mid-journey with several miles left to go.

Lessin needed something with big movements that engaged his body and his brain. He also needed a safe, protected environment close to home. A climbing gym, it occurred to him, might offer both.

He wanted one-on-one instruction, preferably at a low-traffic time. No one, after all, enjoys an audience watching as they Elvis-leg their way up a beginner-level climbing wall. But the first gyms he called either wouldn鈥檛 work with him or wanted him to participate in group lessons. Eventually he called SportRock Climbing Centers, a chain of gyms in the Washington, D.C., metro area. Then-manager Molly Cupka answered the phone and agreed to work with him.

鈥淢y arms were very pumped,鈥 he recalls of his first session. 鈥淚 thought, 鈥楾his is going to be great for me.鈥 You鈥檙e making big movements on purpose. You鈥檙e safe because you鈥檙e tied in, and you鈥檙e never far from home.鈥

Best of all, it appeared to work: Within a few months, Lessin began seeing and feeling a noticeable difference. Soon, he was climbing up to four times a week.

***

By the time she met Lessin, Cupka was regularly working with aspiring climbers as a private instructor. Lessin, however, was her first client who hoped climbing might mitigate the impact of disease.

The improvement in Lessin鈥檚 symptoms was remarkable enough that his physical therapist eventually joined one of his climbing sessions, eager to gauge what made it so effective and whether it might benefit other patients. Impressed by what she saw, the physical therapist published a newsletter write-up and placed it in the clinic鈥檚 waiting room. Before long, Cupka had a growing clientele of Parkinson鈥檚 patients hoping to emulate Lessin鈥檚 results.

Cupka did her research, learning about Parkinson鈥檚 and searching for any information about the benefits of climbing for patients, but there wasn鈥檛 much to find. 鈥淚 just couldn鈥檛 believe no one seemed to know about it,鈥 Cupka says. 鈥淎nd Jon was like, 鈥榃e have to tell people about this.鈥欌

At first, Cupka and Lessin recognized that his outcomes could be anomalous. But then a second client showed improvement, followed by a third, fourth, and fifth. Calling themselves the Fidgety Five, the group began climbing together, with each member experiencing marked improvement.

By 2013, the group had grown to 25 participants and adopted the name . In the years since, the group gained 501c3 status and spread to other gyms in Virginia, North Carolina, and Ohio. Its membership has also expanded to nearly 80 members, ranging in age from late 30s to mid-80s. Many of them compete in paraclimbing, including Puri.

Vivek Puri climbing a slab outside
Vivek Puri, one of the first members of UpEnding Parkinson鈥檚, climbs at Carderock in Potomac, Maryland, during one of the group鈥檚 outdoor excursions. (Photo: James Whitesides (@jtwphotosva))

鈥淵ou would watch them, and there were just these moments that you saw each of them experiencing the same benefits as the others,鈥 Cupka says. 鈥淎nd you start to realize that it鈥檚 real. It鈥檚 an actual thing, and it鈥檚 actually making a difference.鈥

***

Given the difficulty many Parkinson鈥檚 patients encounter just walking from one room to the next, watching them climb can, at first, be astonishing. On the mornings when Up ENDing members meet, it鈥檚 not unheard of to see someone enter the gym using a walker or a wheelchair and then begin ascending the wall with seemingly less difficulty than they experience doing comparatively less strenuous tasks, like opening a carabiner or getting from one route to the next.

鈥淚 have patients who will bring their walkers into the gym and then spend 30 minutes climbing a wall,鈥 says Virginia-based neurologist Drew Falconer, who frequently refers patients to the program. 鈥淚 mean, it鈥檚 crazy. It just defies any sort of expectation of what you think is possible.鈥

While the disease doesn鈥檛 always shorten life expectancy, Falconer explains, it can take a drastic toll on quality of life. The average age of diagnosis for Parkinson鈥檚 is around 60 years. Men are 1.5 times more likely to develop it.

鈥淪o, you have this group of people who鈥檝e worked their entire lives, and now they鈥檙e retiring and going to do the things they love,鈥 Falconer says. 鈥淭hen they鈥檙e told they have Parkinson鈥檚, and you think, 鈥楧amn. That sucks.鈥 But it鈥檚 also paired with the realization that it鈥檚 not terminal. Their life expectancy is the same. So, they fight back against it, and do everything they can to live well, because it鈥檚 not going away.鈥

Dan Medina, a Virginia-based engineer, Parkinson鈥檚 patient, and paraclimbing competitor, ascends a 60-foot wall during an Upending Parkinson鈥檚 session at SportRock Alexandria. (Photo: James Whitesides (@jtwphotosva))

The neurological impact of Parkinson鈥檚, Falconer continues, limits the body鈥檚 ability to ambulate through space, turning seemingly simple tasks鈥攍ike tying shoes or dialing a phone number鈥攊nto much greater challenges. 鈥淐limbing, in and of itself, engages so many different aspects of how our bodies move,鈥 he says. 鈥淵ou鈥檙e talking strength, coordination, core muscles and balance. It鈥檚 almost the ideal exercise for someone with Parkinson鈥檚.鈥

***

As the program鈥檚 grown, so has Cupka鈥檚 desire to validate its outcomes. A long-time climber, she first began working at SportRock more than 16 years ago, eventually assuming her current role as director of the gym鈥檚 location in Alexandria, Virginia. Having studied neurobiology and neuropsychology at the University of California Irvine, she often considered a career in research, even as she ascended the ranks of leadership at the gym.

That education鈥攃ombined with the efforts of several well-connected group members鈥攁llowed Cupka to venture into relatively unusual territory for someone who鈥檚 spent much of her career in the fitness industry: researcher.

Several years after meeting Lessin, Cupka worked with George Washington University to conduct a small study examining the impact of climbing on a small group of Parkinson鈥檚 patients. The results proved compelling enough to gain the interest of two other researchers: Andrew Guccione, a retired professor from George Mason University, and Julie Ries, a professor of physical therapy at Marymount University.

Together, the three launched a larger study in July 2023. By January 2024, they had enrolled 28 patients with the possibility of more. Registered with clinicaltrials.gov, the study is expected to conclude May 2024.

Cupka envisions a reality where climbing is recognized as a valid form of physical therapy for patients with Parkinson鈥檚 and other movement disorders.鈥淚 want insurance to cover this,鈥 she听 says. 鈥淚t鈥檚 a no-brainer.鈥

Molly Cupka, the founder and president of UpEnding Parkinson鈥檚, belays during a group outing to Carderock in Potomac, Maryland. (Photo: James Whitesides (@jtwphotosva))

***

If Mark Twain was right, and there truly is no such thing as a new idea, then someone, somewhere has also connected climbing and Parkinson鈥檚. But if they鈥檙e out there, they鈥檙e maintaining a low profile.

鈥淚 think Parkinson鈥檚 and climbing just seem like such an unlikely pairing that people just don鈥檛 put the two things together,鈥 Falconer says. 鈥淢aybe in some cases it comes down to bias: When we think about Parkinson鈥檚, there鈥檚 nothing about it that seems conducive to climbing a rock wall.鈥

Even as the benefits of climbing for Parkinson鈥檚 appear increasingly more concrete, there are limitations. The gains that appear so soon after participants begin climbing can subside just as quickly. That makes consistency crucial鈥攕omething Puri learned soon after an injury forced him out of the gym for two weeks.

鈥淲ithin just a few days, I found myself needing more medication,鈥 he recalls. 鈥淚 was less mobile, less everything. There were clearly benefits that I wasn鈥檛 getting because I wasn鈥檛 climbing anymore.鈥

While the physical impact of climbing is critical, Falconer says, so are the psychological and emotional effects for people with Parkinson鈥檚. Because the disease affects areas of the brain that produce dopamine and other mood-regulating chemicals, patients commonly suffer from depression, making it difficult to maintain motivation and hopefulness.

鈥淚 think one of the coolest parts about climbing with Parkinson鈥檚 is that it gives an outlet for these people who are struggling every day to live with what they鈥檝e been given,鈥 Falconer says. 鈥淚t allows them to prove to themselves that they can do it. And there鈥檚 nothing more inspirational than that.鈥

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鈥淚鈥檇 Like to Think of Parkinson鈥檚 as My Superpower鈥 /running/news/i-think-of-parkinsons-as-my-superpower/ Mon, 31 Oct 2022 14:00:57 +0000 /?p=2608960 鈥淚鈥檇 Like to Think of Parkinson鈥檚 as My Superpower鈥

One marathoner uses running as a way to thrive with Parkinson鈥檚 disease. New research delves into the benefits of endurance training on the neurodegenerative disorder.

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鈥淚鈥檇 Like to Think of Parkinson鈥檚 as My Superpower鈥

On Sunday, November 6, Joe Drake will run his 15th marathon since first giving the distance a go in 2019. The 26.2 miles he鈥檒l run through all five boroughs of New York City come only four weeks after he ran the Chicago Marathon on October 9.

But that short recovery period is nothing compared to his 2021 racing season. Last year, Drake racked up six marathons in seven weeks, when he ran all the World Marathon Majors (WMM) consecutively (The Tokyo Marathon was canceled, so he ran that one virtually in Seattle, where he lives with his wife).

Due to circumstances surrounding the pandemic, the 2021 WMM spring races were postponed to fall, presenting an unprecedented chance to run Berlin, London, Chicago, Boston, Tokyo, and New York consecutively. The opportunity seemed historic. 鈥淭his is a thing that鈥揾opefully鈥搉o one will ever get a chance to do again,鈥 says Drake. 鈥淪o why not?鈥

He made it through, framing the first five marathons in his mind as just another long run in his training. 鈥淭hen you only really train for the last one,鈥 he says.

Joe Drake in New York City
Joe holds up his medal at the New York City Marathon. He’s ready to line up again in 2022. (Photo: Courtesy Joe Drake)

Running as Medicine

Drake鈥檚 relatively new penchant for marathoning might seem extreme, but since retiring the same year as he was diagnosed, training (and experimenting with training) has been a rewarding way to fill his new wealth of time. Even after tackling a lot of miles in 2021, and dabbling into relay racing with the 208-mile Blue Ridge Relay earlier this year, you won鈥檛 see Drake slowing down with his hobby anytime soon.

That鈥檚 because it鈥檚 more than just a hobby. Running is his medicine.

Just before retiring from his job as an engineer, Drake was diagnosed with Parkinson鈥檚 Disease (PD). The neurodegenerative disease is progressive, with symptoms that affect motor function and non-motor related symptoms that can affect mental health, energy, and concentration.

鈥淏efore I was diagnosed, I was tripping and falling sometimes,鈥 says Drake. As a lifelong soccer player, he noticed he was struggling to make routine plays. He developed a hand tremor.

Running keeps Drake鈥檚 symptoms at bay and significantly slows the progression of the disease. 鈥淓ven training for that first marathon, I was surprised that the symptoms had gone away,鈥 he says. For Drake, PD medication makes it possible to have the energy and baseline to do the amount of exercise needed to slow the disease progression.

The Promising Science Exploring Parkinson鈥檚 and Exercise

According to the Parkinson鈥檚 Foundation, a minimum of 2.5 hours of exercise per week 鈥 especially when started early on 鈥 can help a person with PD maintain and improve mobility, flexibility, and balance. Movement is also proven to be beneficial in stabilizing mood, which is essential as PD impacts the areas of the brain that produce dopamine, serotonin, and norepinephrine.

Scientists have known for a while that exercise is extremely beneficial for people with PD, but narrowing down why has been a challenge. Research published in August in the looked specifically at the hormone irisin, which is secreted into the blood during aerobic exercise. The researchers tested the hormone on mice that had Parkinson鈥檚 or similar symptoms by injecting a viral vector which increased levels of irisin. After six months, the mice who received the injection had no mobility deficits, while the control group did.

鈥淚t was very effective,鈥 says Dr. Ted Dawson, co-author of the study and director of the Institute for Cell Engineering at Johns Hopkins. Dr. Dawson notes that the intervention was very early on in the disease progression in the mice. 鈥淥ne of the things we would like to do is even start it later when the disease is much more entrenched, and see whether it has beneficial effects,鈥 he says.

Though the findings with irisin are promising, Dr. Dawson notes that it鈥檚 probably just one piece of the puzzle when it comes to exercise鈥檚 effects on PD. 鈥淚t’s very likely muscle would secrete other peptides from endurance exercise. The beneficial effects of exercise on overall wellbeing and metabolic effects probably also account for the benefit of exercise,鈥 he says.

Whatever the reason, Drake knows that, without a doubt, endurance training improves his quality of life听 in more ways than he could have imagined.

Joe Drake - Berlin Marathon
Joe crosses the finish in at the Brandenburg Gate in Berlin. (Photo: Courtesy Joe Drake)

Community, Running and Parkinson’s Disease

Through marathoning, Drake has been invited into a community of other people affected by PD, too, while running for the Michael J. Fox Foundation鈥檚 Team Fox. 鈥淚’ve seen people with Parkinson’s all over thriving, despite the disease,鈥 he says. And though everyone is different, he wants people to know 鈥測ou can still lead a very active and rich life,鈥 with Parkinson鈥檚 Disease.

In September Drake released his memoir, , complete with a cover illustrated by his sister who also has PD. His diagnosis has brought him closer to her, as well as another brother who also shares the diagnosis to whom he had hardly spoken for 40 years. 鈥淣ow, whenever I go visit the family on the East Coast, I always stay with him. He gets a bicycle ready for me. We go on a long bike ride together. We cook meals together. My wife and I stay at his house. I have Parkinson’s to thank for that reconciliation,鈥 says Drake.

So no, Drake isn鈥檛 going to stop running anytime soon. He鈥檚 hanging on for the cure. 鈥淢y personal feeling is that I want more people who are afflicted with the disease to understand that, if you do the exercise, you can slow the progression of the disease, so you’re in that much better shape when the cure comes.鈥

And besides, he still wants to get that real Tokyo Marathon medal.

The post 鈥淚鈥檇 Like to Think of Parkinson鈥檚 as My Superpower鈥 appeared first on 国产吃瓜黑料 Online.

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