Lean on me
By Susan Shinn
The meeting room, which is full, contains a lot of friendly faces.
Canes and walkers are relegated to the perimeter as the group’s participants gather around a large conference table.
The Parkinson’s Disease Support Group is nearly a year old, and steadily growing.
It’s easy to understand why. In the United States, 60,000 new cases of the disease are diagnosed each year, adding to the 1.5 million Americans already coping with it.
The condition usually develops after age 60, although the actor Michael J. Fox was diagnosed much earlier.
Symptoms of this movement disorder include tremors, muscle stiffness, slowness of movement and loss of balance.
The support group members would also add difficulty swallowing and loss of the voice’s volume to the list.
It’s a long list of symptoms, but one reason the support group gathers is to share ways of coping with the condition.
Those who have Parkinson’s say it can be an isolating disease.
That’s one reason the group’s members look forward to the monthly get-togethers.
“We’re up to 22 families,” says Dee Williams, whose husband, Charles, has Parkinson’s. The couple serves as the group’s facilitators.
The support group meets the first Tuesday of each month at 1 p.m. at First Presbyterian Church. Members come from all over Rowan County and Dee says that new members came from Mooresville to the April meeting.
“I think it’s good to know that you’re not alone,” says Naomi Drye. She and husband Carl, who has PD, live in Salisbury. “When you first find out, you don’t know what to do or say.”
Group members, she says, have discussed everything from symptoms to medications to exercises to physicians.
“It’s been a great help to me,” she says.
“We get together and talk about how we feel and what’s going on in our lives,” says Bill Miller, who has PD. His wife Katherine, a retired nurse, serves as the group’s secretary.
“One thing that helps me,” Bill continues, “is going to Rufty-Holmes Senior Center and doing chair yoga. Your muscles tend to draw up. You can’t button your shirts. Your wife has to button your shirts. You can still wash the dishes, though.”
Group members know that the disease is not fatal, but they have to be careful about complications. One of those is the tendency to choke easily. That goes for food or beverages.
Steve Douglas says that drinking water at room temperature seems to work for him. Bill says that tucking his chin helps him swallow beverages.
The disease also can affect the memory.
Charles says that he can remember actors’ names from “way back,” but can’t recall what happened last week, for example.
“When I was diagnosed with Parkinson’s, I was being treated for depression,” says Lewis Taylor of Faith, who attends meetings with wife Jean.
After changing medications, he says, “Jean says I’m getting a whole lot better. I’ve got a shop and I do little things around the house. I’m getting around to the honey-do list.”
Lewis also works on strengthening his voice with vocal exercises.
He knows to tuck his chin and turn his head to the right when he swallows.
“I can swallow water good that way,” he says.
“It’s a lot of trial and error,” Dee says.
She points to the group’s diversity.
“We’ve got golfers, we’ve got artists,” she says. “We’re reaching out.”
Dr. Bob Wilson, a retired dentist, is one of those golfers.
“Parkinson’s is embarrassing,” he says emphatically. “At least most of us will admit to that. Some days, you got to allow Mr. Parkinson to have his day.”
“It is embarrassing,” he says. “It’s hard to let her do the running. You don’t like to be a burden to the spouse ó and you just kinda sit by and watch.”
Most of those spouses just say it comes along with the territory of being married for the long haul.
“I hear, ‘I’m a lot of trouble,’ ” Naomi says. “I say, ‘The only time you’re a lot of trouble is when I hear that.’ It’s not just his disease. It’s our disease.”
“The group has meant a lot to me,” says Rachel Sifford of Faith, who attends with Jean, her sister, and Lewis. “I’m a widow and alone, and it just terrified me when I found out I had the disease. It just helps me to have this group.”
Jean and Lewis have been married for 55 years, so they’re very much partners in dealing with this disease.
When he goes out, Lewis uses a four-pronged cane to help him feel more steady.
If he and Jean are doing a lot of yard work ó and they often do on their one-acre property ó he now uses a scooter to get around.
He and Jean have purchased the wood to build a ramp on the back of their deck, which will allow him to ride his scooter up and park there. “We handle the changes as they come,” Jean says.
Her mother was bedfast with the disease, she says, for 15 years.
But Lewis gets around pretty well. He has a shop out back ó it’s as immaculate as their house.
His current project is making small, wooden balls on a lathe. Their son gave them a beautiful wooden bowl for Christmas, and Jean wanted them for the bowl.
Lewis works in the yard when it’s pretty; in the shop when it’s not. He has done woodworking his whole life. He’s built on to their Faith home several times over the years, and built Jean several pieces of oak furniture.
They’re looking forward to getting the deck done.
Jean will help Lewis lift the heavy boards so he can cut them down to size.
“I got a good helper,” he says. “She’s strong.”
The next Parkinson’s Support Group meeting is set for 1 p.m. May 6 at First Presbyterian Church. For more information about the group, call Dee Williams at 704-212-2938.
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