Madison MS Advocate Wants People To Know Life Isn't Over

MADISON, WI—Drumming was always a part of Jim Turk's life.

After the lifelong Madison resident was diagnosed with multiple sclerosis in 2008, he lost some of his physical capabilities within a few years. That's when Turk exchanged his personal drumming equipment for handheld drums he could use to teach the instrument.

He now takes the equipment to assisted living facilities to teach therapeutic drum circles mostly to people with disabilities.

While the road since his diagnosis hasn’t always been an easy one, Turk says he makes “a very strong point to be very positive.” Named the MS Activist of the Year in 2019, Turk has taken it upon himself to show people living with the disease that life isn’t over.

An active member of the MS Society and busy with his own advocacy endeavors — such as the drum circles — Turk is constantly working with other people who have MS or other disabilities. Turk says the internet can be a dark place and makes people fearful of what life will look like when they first learn about MS.

But it doesn’t have to be that way, Turk said.

“A lot of times with people just by talking to me and hearing my attitude, that’s enough to sort of give them a different attitude toward it,” Turk said.

A moment that sticks with him, even three years later, was when he was chatting with a woman at an MS event. She told him,“you're the first person I've ever talked to where I've honestly not felt afraid, when I’m talking to them about MS.”

“So that was a neat thing for me to hear, so that's kind of what I do,” Turk said. “I always tell people that life isn't over.”

Like his drum circles, Turk is always looking for ways to make himself available to others, Autumn Neugent, a friend and fellow MS advocate, said. When the COVID-19 pandemic began, Turk noticed that being confined to his home all day was making his mobility worse.

So, a month after the lockdowns began, he started his daily “12 O’Clock Shakedowns.” Every single day, Turk dresses up in a pair of sunglasses (most recently heart-shaped lenses), breaks out some maracas and combines his favorite songs with mobility exercises.

Turk said, even as things return back to normal, the classes still get around 50 viewers, mostly made up of people with either MS or another disease affecting their mobility. Besides the exercise component, Neugent said the shakedowns created a community and gave people social interaction when it was too dangerous to leave the house.

Beyond his own projects, Turk is involved in the MS Society, where he reviews grants and serves as a district activist leader, meeting often with local leaders like Rep. Mark Pocan and Sen. Tammy Baldwin. He is also working with the Disability Vote Coalition to tackle voting suppression, and how new voting laws—like restrictions on mail-in ballots—can harm voters with disabilities.

Turk's friend, Neugent, described him as someone who is warm, genuine and makes friends wherever he goes. And while most people know him as a positive, energetic leader, it hasn’t always been easy for him to maintain that attitude, especially the three months right after his diagnosis in 2008.

“I had been running marathons,” Turk said. “I was always in really good shape. I was a drummer in a band and had just finished graduate school. I was doing all this stuff and I defined myself by burning the candle at both ends and being really active, a can do anything kind of guy.”

He initially thought the worst. But that all started to turn around after Turk swallowed parasite eggs for a clinical trial and made national headlines.

With his scientific background, he has a master’s degree in biotechnology and was a former research administrator at the University of Wisconsin-Madison, Turk became the ideal candidate and spokesperson for clinical trials because he could explain the process and reasoning behind them.

“Once I got into the clinical trial initially, that's kind of what started the whole thing,” Turk said. “I was like, well, now, at least I'm making a difference at some level even if I just think it in my head.”

But his impact has been felt by so many and not just those in the MS community, Neugent said. People who attend his shakedown, groups like Walk for MS and those who participate in other projects he leads have all benefited.

“I just personally want to thank him for all of the advocacy work he does for himself and others—emphasis on the others,” Neugent said. “It is so very appreciated. In the MS community and just overall, his advocacy serves so many different groups.”

While a lot has changed in the last 13 years, Turk said he likes the person he has become. It takes a while to get to this point of acceptance, Turk said, but he has seen the effect he can have in other people's lives.

"There's a lot of things you can do and a lot of differences you can make," Turk said "As weird as it sounds, I often have said that I'm not sure that I would go back if I could. "