Thursday, March 28, 2019
By Leonna Heuring/Standard Democrat
When Murray Sullivan learned about the new Parkinson’s disease support group forming in Sikeston, he knew it was something he wanted to attend.
Even though Sullivan had been diagnosed with the disorder in 2012, he said there are always learning opportunities with the disorder, and there’s always someone who has been newly diagnosed.
“When you’re first diagnosed with it, one tends to have loneliness,” said the Sikeston resident and retired educator. “The support group allows us to talk with each other and share what’s going on … It’s satisfying to be able to talk about it.”
Parkinson’s disease is a long-term degenerative disorder of the central nervous system that mainly affects the motor system. As the disease worsens, non-motor symptoms become increasingly common.
Hannah Glueck, who has a doctor of physical therapy degree, with Missouri Delta Medical Center’s ReStart Rehabilitation in Sikeston, started the group meetings in August.
“Last year I was treating a gentleman with Parkinson’s at ReStart, and I thought he’d benefit from a support group,” Glueck recalled. “I knew they had a support group in Cape and told him about it. He could no longer drive and I asked if it would be difficult to find a ride to Cape consistently. He said he couldn’t do that. and I asked if he thought he would benefit from a support group in Sikeston.”
The man said he would, and so, at 2 p.m. on the third Tuesday in August, the Coleman Room at Missouri Delta Medical Center in Sikeston opened for an hour to welcome individuals and/or their caregivers to the first meeting of the Parkinson’s disease support group.
“The primary goals and reasons for starting the group is to get those with Parkinson’s to know they’re not alone and to be able to discuss their symptoms with people who understand,” said Glueck. “The time of the group should not be with me talking; it should be with people discussing among themselves.”
Initially, the group had a “welcome meeting” and attendees talked about when they were diagnosed and common symptoms they had. The group’s discussion topics have included falls and freezings, pain, anxiety and even medications, Glueck said.
“Every meeting I try to ask what topic people would like to talk about for the next month,” Glueck said. “I usually have some educational materials and information about whatever topic we have and then open up the meeting for them to talk.”
On average, anywhere from eight to 12 individuals who have Parkinson’s disease and their caregivers, if they wish, attend the monthly meetings, Glueck said.
Glueck said she thinks the monthly support group meetings in Sikeston are great resource for the community.
“There has never been a support group for Parkinson’s in Sikeston before, and Hannah is doing a fabulous job organizing speakers and appropriate topics to keep it informative and interesting for the attendees,” said Sharon Urhahn, marketing director for MDMC.
During the March meeting, attendees were treated to guest speaker, Danny L. Rees who runs the nonprofit, Christian Boxing Academy, in Cape Girardeau. Some of the group’s attendees also participate in this free boxing group three times a week. They carpool to the Academy.
Boxing can help make participant’s muscles bigger, increase their confidence and make their core stronger, Rees said during the support group meeting It improves their mental aspect, and they can also hang out with other people who have Parkinson’s, he said.
Sullivan has been attending the boxing sessions since October and said it’s been very helpful to him.
“I feel better and enjoy the camaraderie,” Sullivan said of the boxing sessions.
Most people have heard of celebrities who have Parkinson’s with the most famous case likely being 57-year-old Michael J. Fox, who was diagnosed with the disease in 1991 at the age of 29. Most recently, actor Alan Alda, 83, announced he has Parkinson’s.
Parkinson’s disease affects one in 100 people over age 60, according to the Michael J. Fox Foundation. While the average age at onset is 60, people have been diagnosed as young as 18. There is no objective test, or biomarker, for Parkinson’s disease, so the rate of misdiagnosis can be relatively high, especially when the diagnosis is made by a non-specialist.
Estimates of the number of people living with the disease therefore vary, but recent research indicates that at least 1 million people in the United States, and more than 5 million worldwide, have Parkinson’s disease, according to the Michael J. Fox Foundation.
“Parkinson’s disease is fairly common, but people don’t really know it,” Glueck said.
There are two dominant types of Parkinson’s: tremor predominant and postural instability/gait disorder. Tremor predominant Parkinson’s involves shaking or trembling of the body. People with postural instability/gait disorder have more trouble with walking and balance.
Symptoms vary for each person, Glueck said. Difficulty walking, falling frequently or suffering from the shaking of body parts are common symptoms of Parkinson’s disease. Both hands and facial tremors or a whole side of a body can be impacted.
“Within our group, the most common first symptom were tremors in the hands. They noticed tremors in their handwriting and difficulty walking or tripping over their own feet,” Glueck said.
Other issues include the flat affect, which means a person stops being very emotional and can’t emote very much in their face, Glueck said.
“They always look bored or tired — not that they are — but their face no longer displays those emotions,” Glueck explained.
Various practices can be learned to alleviate some symptoms, Glueck said. Therapy may be a benefit for some people, and medications can help to a certain degree, but currently there is no cure for Parkinson’s.
Some of the symptoms associated with Parkinson’s can be embarrassing for those who have it, Sullivan noted. For example, drooling is a symptom and oftentimes a person who has Parkinson’s isn’t aware they’re doing it, he said.
Many of the attendees have similar symptoms, but they don’t have the same sequence of symptoms, said Sullivan, who first noticed his tremors in 2011.
“Parkinson’s is something we all have in in common,” Sullivan said of the group.
For Sullivan, Parkinson’s has affected his speech and sense of smell, he said.
“Most of us have been afflicted with the same general condition, and we can talk quite candidly and honestly about it,” Sullivan said. “Through the support group, it’s good to know that you’re not alone.”