VCU PMDC patient raises funds to support dystonia awareness
By Sean Gorman
Steve Swarr’s advocacy for dystonia awareness has taken him to Capitol Hill to lobby lawmakers for federal money to unlock further research into the movement disorder he was diagnosed with decades ago.
And on Sept. 14, it took him on a mini safari of sorts at the NOVA Wild zoo near his Ashburn, Va., home. Through that fundraising event, Swarr generated more than $5,000 in donations to support the Dystonia Medical Research Foundation, a nonprofit that raises awareness about the disorder while working to find more ways to treat it.
The event was the latest awareness event for Swarr, a patient at the VCU Parkinson’s and Movement Disorders Center who has been volunteering for dystonia support causes for about a decade.
“It’s a great way to meet other people with dystonia and to meet everybody who’s really actively involved and trying to do research and raise money for treatments,” Swarr says.
Event offers support, raises awareness
The Dystonia Medical Research Foundation organizes the Dystonia Zoo Day event every year to bring patients and families from around Virginia, Maryland and Washington, D.C. for group tours of the Northern Virginia zoo.
In advance of the outing, Swarr reached out to businesses, organizations and individual donors to raise money for the research foundation. Swarr came to the event with a group of about 15 family members and friends.
“They know what I’ve been going through for the past four decades,” says Swarr, a 53-year-old environmental engineer. “We just had a fun day at the zoo.”
Caileigh Dintino, a PMDC clinical research coordinator, also traveled up from Richmond to show support by taking part in the Zoo Day event. To thank Dintino for making the trip, Swarr gave her a painting he made of the Northern Lights.
A mystery ailment and a diagnosis
Swarr learned more than 40 years ago that he has cervical dystonia, which causes involuntary contractions in his neck and back muscles. Swarr was 12 years old at the time and started to experience neck pain along with tightening muscles that shifted his posture.
“They didn’t know what it was at the time. My doctors couldn’t figure it out. I eventually got diagnosed with dystonia and was in a wheelchair for about a year at the hospital,” Swarr says. “I’ve been in and out of doctors’ offices for pretty much my whole life dealing with this.
I’ve also seen a progression in better treatment and better awareness.”
Swarr, who also has essential tremor, had deep brain stimulation probes implanted years ago that addresses the symptoms caused by that condition as well as those caused by dystonia.
He regularly travels to Richmond to see PMDC Director Brian Berman, M.D., for treatment that includes botulinum toxin injections to ease Swarr’s dystonia symptoms by calming his muscles and lessening the intensity of muscle contractions.
“It gives you more control over your body,” Swarr says of the injections. “I can have more control over my head, and I’m able to hold my head a little bit straighter. I’m able to work and be more productive.” Swarr adds that he’s in good hands getting care from Berman.
“He’s a good doctor. He’s very personable. And he knows dystonia really well. He’s got a wealth of knowledge,” Swarr says. “He’ll tell you what he thinks, but he also says ‘it’s your body. You decide what you want to do’. And he’s very open to listening, which I appreciate.”
Swarr says he’s planning to spread the word about the Zoo Day event next year among those like him who are living with dystonia. And he’s grateful to have been able to have raised the amount he did at this year’s event.
“Anything that I can do to support the cause makes me feel good,” he says. “I do what I can.