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Parkinson’s patients find community and strength through climbing
When Tony Rissi wakes up most mornings, Parkinson’s disease makes his body so stiff that he’s unable to get out of bed. But by 2 p.m. on Wednesdays, he’s 50 feet off the ground after scaling a rock-climbing wall, reports BritPanorama.
It’s a feat that he’ll accomplish multiple times in an afternoon alongside a couple dozen other people with Parkinson’s — all at varying stages of progression — who participate in an UpEnding Parkinson’s Meetup at The Gravity Vault gym in Radnor, a suburb of Philadelphia.
The program offers Parkinson’s patients the opportunity for physical activity that has been shown to improve many symptoms and possibly slow the progression of the disease. But it’s also become a sort of informal support group — offering both a sense of empowerment and community for those who participate and their caregivers.
For Tony, getting to the rock-climbing gym follows a carefully coordinated morning routine and a smorgasbord of medications, all with full support from his caretaker and wife of 55 years, Carol. His shuffling gait — a common symptom of Parkinson’s — is apparent as he heads toward his first climb, but the camaraderie and support in the room is palpable as he makes his way up the wall all on his own.
“I think it’s built up his confidence more,” Carol says. Tony has always been someone who kept to himself, she says, but Parkinson’s-related changes have made him more of a “loner.” Regularly seeing the same group of people, who also understand what he’s going through, has helped.
“I think he’s afraid to approach people because he’ll lose his words,” she says. “It’s very difficult for him, and I don’t want him to feel like he’s less than because he forgets. Because he’s a very intelligent guy, it’s just something that happened, and it’s something we’re always working on.”
“Did that help you out?” Carol asks, turning to Tony. He also has Lewy body dementia, a form of dementia that was first discovered in patients with Parkinson’s disease. Carol listens patiently as Tony works to form his thoughts, stepping in only when he’s showing signs of frustration or defeat in the battle within his brain.
When he responds, his voice is low and slow, a symptom of Parkinson’s — but his clever wit cuts through clearly. “It helps me because, as you know, I’m just such a friendly guy,” Tony says, flashing Carol a sly grin. She laughs, and Tony seems to have achieved exactly what he meant to.
Parkinson’s disease is a progressive disorder of the nervous system that affects neurons in the brain that produce dopamine, the chemical the body uses to control movement. It can affect everyone differently, but hallmark symptoms include tremors, stiff muscles, slurred speech and slow movements that all get worse over time.
Treatment with medication can help patients’ brains make more dopamine to replenish the deficit caused by the affected neurons. However, there is no cure for Parkinson’s — which can leave many patients feeling hopeless.
When Bonnie Queen was first diagnosed with Parkinson’s 16 years ago, many of the doctors she saw early on made her feel like there was no point in trying to maintain her independence or quality of life.
“When I was first diagnosed, I thought I was going to walk out of the office and fall down. I was so devastated by the news, and the neurologist didn’t help me,” she said. “I didn’t think there was anything I could do.”
She especially disliked that the doctors didn’t explain how important exercise could be and didn’t push her to do more.
“In fact, a friend of mine said that during her diagnosis, she said to the doctor, ‘So you’re telling me that it’s time to move it or lose it?’ But the neurologist said, ‘Move it and you’re going to lose it anyway.’ How horrible is that?” Bonnie said. “I want to be as strong and independent as possible for as long as possible.”
She tried out more than a half-dozen doctors before finding one who better aligned with her philosophy and felt like he could be a true partner in the “lifelong connection” she knew she was looking for: Dr. Tsao-Wei Liang, division chief and medical director of movement disorders with Jefferson Health. Bonnie feels that he respects her as the expert of her own experience and values the emphasis he puts on physical exercise.
“The mindset that I can be a serious athlete and have Parkinson’s has been so good for me,” Bonnie said. “Parkinson’s makes you feel feeble and frail and fragile but climbing and boxing are the opposite. They make you feel strong and cool and tough.”
Liang has been practicing neurology for more than 20 years and states that Parkinson’s is never easy diagnosis to give. “For some people, it can signal the end, rather than, say, a new beginning or a new chapter in life. So it can be very difficult to accept.”
He adds, “Once a patient loses hope, I think that’s when the condition begins to show more accelerated slides. I try my best to bolster spirits and to be their advocate, be on their side, throughout the journey.”
Liang says that exercise in general can help support both the physical and psychological health of people with Parkinson’s, but there’s something particularly intriguing about rock climbing and the benefits it can provide — and he has even come to visit The Gravity Vault to see Queen and a few of his other patients in action during the UpEnding Parkinson’s meetups.
One of the earliest challenges for people with Parkinson’s is motor planning, or the disconnect between the subconscious movements that we make every day without thinking about them and those that are more deliberate, Liang explained.
“In terms of how we move and how we think, we often don’t necessarily slow it down to the level that you do in rock climbing or wall climbing, because you have to basically make every movement deliberate. It’s planned,” he said.
Patients often send him videos of themselves at the rock-climbing gym, sometimes capturing another patient scaling a different wall in the background. Liang says he watches them all with joy and excitement. “It’s exhilarating and terrifying at the same time, and what does that do to someone’s dopamine delivery systems? It can sort of spice things up and rejuvenate them,” he said. “It’s just as important to allow someone to see that you can live with Parkinson’s disease. And I think this is one of those types of interventions.”
While medications can be a good front-line treatment for Parkinson’s, effectiveness can wane over time, leading researchers to pursue new and better treatment options, according to John Lehr, CEO of the Parkinson’s Foundation.
“A couple of decades ago, clinicians would tell people with Parkinson’s not to exercise because they were worried about them falling or injuring themselves,” Lehr mentioned. “Today, we know that exercise is probably one of the best things you can do to maintain your health — and not just your physical health, but your overall emotional health.”
An estimated 90,000 people in the US are diagnosed with Parkinson’s each year, and Rose King was one of them this year. She joins the 1 million or so nationwide who are living with Parkinson’s, which is now considered to be the fastest-growing neurological disorder in the world.
A strong community has built around the growing need, and Rose considers the program at The Gravity Vault one of her “Parkinson’s perks.” The Radnor location is unique in providing the program to Parkinson’s patients and their caregivers for free.
It’s been less than a year since her formal diagnosis, but Rose was expecting the news when it arrived. “My hand had been shaking for probably two years, and then my legs started shaking,” she said. The picture became pretty clear when she realized that neurological disorders affecting her sleep were also precursors to a Parkinson’s diagnosis.
Now she’s doing everything possible to slow the disease’s progression. She has cut red meat and sugar out of her diet — she only really misses ice cream, she says, but frozen red grapes are a good alternative. She has alarms set to keep her medication schedule tight, plays word games with her husband and son nearly every night, and exercises as much as she can.
Rose tries to push herself physically and mentally at the rock-climbing gym, recently experiencing her first fall. “It was very unsettling at first, but I didn’t take it as a defeat,” she said. “Every muscle in my body was hurting when I was done with that one climb. But I see everybody else there trying to do them. No matter what level they’re trying to do, it doesn’t matter. People are just so excited to get to the top.”
And she’s encouraged by the strength and resilience she sees in patients who have been living with the disease for much longer and are still able to rock climb without inhibition.
At least 15 people attend the UpEnding Parkinson’s meetup at The Gravity Vault in Radnor each week, and the group
