Juneau residents fight back against Parkinson’s

We cannot choose our fates, but we can choose how we meet them.

For many residents of Juneau with Parkinson’s disease and across the country, they choose to do so in a gym a few days a week: eyes wide and fists balled, taking a swing.

“The people down there discovered the training regimen for boxers worked really well for stalling or even walking back the symptoms of Parkinson’s. They developed the regimen for Parkinson’s folks,” said Joe Parrish, managing partner for Pavitt Health and Fitness in an interview. “There’s classes in Anchorage and Nome. There’s a few more places in Alaska that have it.

[Despite high-climbing rescue, eagle euthanized for injuries]

The regimen, called Rock Steady Boxing, was codified in Indianapolis some years ago, working with health care professionals and health colleges to develop a program that actively addressed the effects of Parkinson’s. It got started in Juneau in 2016, when residents living with Parkinson’s heard about the program.

“There was a group of people with Parkinson’s that met every Wednesday at the Pioneer Home. One of their members, Richard Steele, found out about it. We had some meetings with Richard and he presented the idea of Pavitt Health and Fitness sending some trainers down to get certified and giving it a shot up here,” Parrish said. “The Parkinson’s group raised the money to send our first person to get trained. They then raised money to get others sent, too.”

Now, with a grant from the American Parkinson Disease Association, the class goes on Zoom to participants from Ketchikan to Mexico to Montana to Rhode Island, allowing those who might not have a local affiliate with the class to exercise over the internet with trainers in Juneau in their own fight against the neurological disease.

Punching back the disease

Steele, along with Kerry Howard, spearheaded that initial effort. Steele is still attending the classes today, five years later, and enjoying the opportunity it gives him.

“It puts you in control. It fights progression and it might save your life,” said Steele. “Sitting in a chair, sedate, is no good.”

The program, with its emphasis on the movements of boxing, crossbody movement and coordinated action, is purpose-built to counter the damage the disease causes to the nervous system.

“Some of our boxers have gloves and even bags at home. They just get into the position and strike the air. It’s really cognitive,” said Janet Valentour, one of Pavitt’s Rock Steady coaches. “That’s the thing with Parkinson’s. They have to think, strike one and then the body has to respond. That’s part of the medicine.”

Many of the participants expressed their enthusiasm for the class.

“(I enjoy) the workout and all it does for you. You get up the next morning in better shape than you went to bed,” said Steve Wolfe, who participates in the class with his wife, Bev Ingram, acting as his cornerwoman, in an interview. “It’s an exceptional program. The coaches are fabulous.”

The class is also a social experience for many as well, said Ingram. The solidarity of fighting the disease together can be powerful, Steele said — there’s a strong sense of collegiality.

“He wakes up each morning and says, today is a Rock Steady day,” Ingram said. “It keeps him going.”

Some of the longtime participants of the class have died since the program got started, Steele said, but their tight bond with the other participants still exists.

“The time clock — ‘Ozzie’ Orsborn, that was from his memorial, Steele said. “Till a month from his death, he was in the class.”

Dreaming a little bigger

Parkinson’s enhances the risk of becoming seriously ill due to the coronavirus. But after a bit of restructuring into the in-person/Zoom hybrid classes, the boxing continued.

“COVID changed things,” Steele said. “They got the idea to chase some grant money, and now we’ve got people from all over.”

The grant, from the APDA, funds Pavitt coaches to hold class once a week for people not just in the studio but across the country.

“We chose (Pavitt) because we had some fitness instructors assess a video of their class and it was really high quality,” said APDA program manager Jennifer Gillick in a phone interview, citing the instructors high level of training and the heart they showed. “When COVID hit, we wanted to move the classes online. It’s critical for avoiding loneliness and maintaining physical conditioning.”

The advent of Zoom and similar programs allowing distanced activities has been one of the good things to come out of the coronavirus pandemic, Gillick said.

“It’s been an interesting development, Gillick said. “It’s one of the positive things to come out of COVID — the ability to reach people outside your geographical area. It allows people to reach help from wherever,” Gillick said. “For Pavitt fitness, there’s only a certain percentage of the population in Juneau that has Parkinson’s. Being able to reach out and do their work is great.”

That “wherever” has been quite a spread, Valentour said.

“We’re meeting some really wonderful people in Rhode Island, New York, Georgia, Missouri. I think one of our people is in Mexico,” Valentour said. “The money provides a free class on Saturdays to anyone that has internet. Pavitt can pay its coaches to produce a class for anyone. Our goal is to pull in more Alaskans. But it’s been dramatically fun to talk with all these people from all over.”

The grant has been a fabulous success, Parrish said.

“The partnership with APDA through this grant has exceeded our expectations. It’s been really great,” Parrish said. “We’re always looking for ways to increase our outreach to people.”

It’s a new way for Juneau to make a difference, Steele said.

“It was kind of an “ah-hah!” moment that we could market things from a distance,” Steele said. “On Saturday, we had 39 people.”

The class is good, but it isn’t for everyone, Valentour cautioned. Each applicant for the class does an interview with Valentour so she can assess things like fitness and balance, and to see what adaptations instructors need to make to bring them into class.

“Rock Steady’s not for everyone. Boxing is really aggressive,” Valentour said. “We’re finding most of our boxers were athletes before they were diagnosed.”

Coronavirus made it difficult to keep having the class, Parrish said, but the dedication of the participants kept it moving forward, relaying the words one of the boxers told him.

“He said, if I get COVID, it’ll kill me. And if I don’t come to this class, it’ll kill me,” Parrish said. “So we kept the class going.”

• Contact reporter Michael S. Lockett at (757) 621-1197 or mlockett@juneauempire.com.