Local young-onset Parkinson's patients find ways to improve quality of lifeFARGO - Denise Morris was diagnosed with young-onset Parkinson’s disease shortly before her 41st birthday. “Parkinson’s isn’t just an ‘old person’s disease.’ It affects young people, too,” she says.
By: Meredith Holt, INFORUM
FARGO - Denise Morris was diagnosed with young-onset Parkinson’s disease shortly before her 41st birthday.
“Parkinson’s isn’t just an ‘old person’s disease.’ It affects young people, too,” she says.
In the 10 years since, the Fargo woman has made adjustments as her symptoms progress.
“I’m the kind of person who used to move at full speed ahead. I hit a point where suddenly I found that I was kind of stuck in second gear,” she says.
By her mid-40s, Morris had to leave her job as a social worker due to her fatigue, severe muscle aches and difficulty getting around.
“When I tried to move, it was like my body wouldn’t cooperate with my brain,” she says.
She’s not alone.
The Parkinson’s rate does increase with age, but, according to the Parkinson’s Disease Foundation, about 4 percent of the 1 million Americans living with it are diagnosed before age 50.
Morris runs a monthly support group for young-onset Parkinson’s disease at HeartSprings Community Healing Center in Fargo.
“There are a lot of young people diagnosed with Parkinson’s in the community,” she says. “Most of them continue life as it is until things become more difficult, and then they reach out for support.”
When she first left the workforce, Morris worried that she’d lost her sense of purpose. Acknowledging change is part of the process of adapting to life with Parkinson’s.
“Any time something changes, the person experiences a little bit of a loss,” she says. “It’s very hard to grieve that because people around you don’t recognize it as a loss.”
Not all losses are immediately apparent. Although younger patients are more at risk of developing medication-related side effects like tics and spasms, not all of them do.
Sanford nurse practitioner Sarah Matcha says that’s just one of the misconceptions about the disease.
“People don’t know a lot about it, and what they do know about it may not be the truth,” she says.
The previous school of thought, for example, was to delay treatment for as long as possible, but research has shown that the earlier symptoms are treated, the better.
“Early, aggressive treatment of symptoms, aggressive participation in physical and speech therapies, and the more time and effort they put in, the better the results,” she says.
Matcha recalls several patients who said they didn’t want to start medication or didn’t need therapy, but once they followed recommendations, they became more mobile.
“Patients who were experiencing posture changes, dragging their feet and falling several times a day did therapy for a month and reported drastic changes,” she says.
Tuesday’s fourth annual Parkinson’s Disease Community Symposium in Fargo focuses on alternative and complementary therapies like yoga, tai chi and music therapy.
Matcha, who’s worked with hundreds of Parkinson’s patients, will speak on mood, memory and deep brain stimulation during the lunchtime session.
“We may not be able to cure your disease or reverse your symptoms, but we can give you better quality of life,” she says.
In 51-year-old Morris’ support group, what’s new and upcoming in the field is a regular topic of conversation.
“We’re all focused on what it is we can do for ourselves outside of mainstream medical treatment,” she says.
Despite her limitations, Morris tries to stay as active as she can. She takes walks, does adaptive yoga, and occasionally participates in Barbara Edin’s tai chi chih class at HeartSprings.
Edin, who’s been practicing physical therapy for 30 years and tai chi chih for 20, says it’s a form of “movement meditation” rather than exercise.
“You do a movement, and then you pause. You do a movement, and then you pause,” she explains.
A study published in a 2012 issue of The New England Journal of Medicine found that the similar tai chi improved postural control in Parkinson’s patients.
Most of the people who come to Edin’s Thursday morning tai chi chih class have Parkinson’s.
“With Parkinson’s in particular, I think it really helps with balance, postural stability and the ability to feel safe when they’re moving. I think it also helps decrease the fear of falling,” she says.
The practice helps people relax, which in turn helps them focus so they’re better able to bounce back from a disturbance in balance.
“It’s like a tool you keep in your back pocket that you can pull out when you need it,” Edin says.
Though it isn’t easy, Morris tries not to focus on her limits, and helps others do the same.
“My whole approach to life is different. I don’t look at Parkinson’s for myself or others in terms of symptoms, but holistically,” she says. “When we treat the whole person, the symptoms become less of a challenge.”
If you go
What: Parkinson’s Disease Community Symposium on Complementary Therapies
When: 10 a.m. to 3 p.m. Tuesday
Where: Ramada Plaza & Suites, Fargo
Info: Admission is free, but seats are limited to the first 200. Call (866) 559-7005 to register.
Readers can reach Forum reporter Meredith Holt at (701) 241-5590