December 1, 2004
Group aids Parkinson's disease sufferers
Traverse area Parkinson's support group provides outreach for the past 20 years
By Carol South
Herald contributing writer
When faced with a diagnosis of a progressive chronic condition, one that can turn life upside down, many people with Parkinson's disease and their families have turned to Maxine Meach for help.
The co-founder of the Traverse Area Parkinson's Support Group, Meach has been facilitating education, outreach and support to families for two decades. Her late husband, Charles, had the disease for more than ten years before he died. They and another couple, whose husband also had Parkinson's, founded the organization in 1984. Their mission was to help themselves and help others navigate a confusing path.
"Twenty years, there was a need for finding out more information, there wasn't any like there is to be had today," Meach said. "At the first meeting, I put a notice in the paper and we expected a few people but 15-20 showed up."
Parkinson's is a chronic, degenerative disease that affects every system in the body. Characteristics of the disease include a mask-like face, tremors, shrinking handwriting, a soft voice and a distinctive walk. While researchers have not yet determined the cause, it is predominately a male disease. Notable people with Parkinson's include Pope John Paul II and Michael J. Fox.
"People hardly every die of Parkinson's but they become very weak and unable to help themselves in many ways, like feeding, dressing and walking," Meach said. "It's a terrible disease. No two people are alike in how it presents itself."
In the region, Meach has been an indefatigable educator about the disease. Every monthly meeting highlights some aspect of the disease and how it affects an individual and family medically, socially or financially. Speakers have included doctors, nurses, pharmacists, physical therapists and human service workers.
The support group also provides a crucial social connection for individuals who have Parkinson's or their families.
"Once you have Parkinson's, you sort of lose you friends because you can't keep up with them," Meach said, adding that often: "Families don't get involved as much as they should."
Sometimes the monthly meetings divide into two discussion groups: one for people with Parkinson's and the other for their caregiver.
"Wayne was at a group discussion where a guy was talking about a voice training technique that helped him with the whispering," said Lois Cochran, who has been a member of the support group for around five years.
Her husband, Wayne, has been diagnosed with Lewy Body disease, a condition with similar symptoms and medications to Parkinson's Disease. The couple greatly appreciates the information and support they receive at the monthly meetings, which they learned about from their neurologist.
"The support group is just the best thing, you have a problem - different things pop up all the time - and you have questions, there's usually help at the meetings," Lois Cochran said. "We've learned about all the agencies that can help, too."
An annual event is a Symposium every June, which attracts hundreds of attendees from around the state. For two decades, these Symposia have been dedicated to helping people and families affected by Parkinson's. Meach lines up speakers from around the nation to highlight the latest information all aspects of Parkinson's disease and answer attendees' questions.
"I think the first one we had 75 people, jammed in a little hot room with no air conditioning," she recalled. "We expected 35 people."
"Education is so important because things are moving so fast these days," Meach noted.
The Traverse Area Parkinson's Support Group meets monthly on the fourth Wednesday, except for November and December. The December meeting will be a Christmas party on Wednesday, December 8, at 11 a.m. at the Cottage Cafe. For more information on the group, the Christmas party or the upcoming Symposium in June, 2005, call Meach at 947-1946.