Parkinson’s support group raises awareness
PARKERSBURG – Living with Parkinson’s disease is a challenge for those with the disease and those who care for them.
Several people in the area with the disease meet regularly in a support group at the Vienna Public Library.
Larry Ice, the organizer of the group about eight years ago, said the support group meets on the second Saturday each month at the Vienna Public Library.
“We find it beneficial to get to know other people who have the same disease and find out they are coping with it,” he said. “Often we find answers to questions we don’t get otherwise.”
Ice said the support group meeting in Vienna has people who come from Wood County and other counties. He said there are groups nearby. He has attended meetings as close as Belpre and as far away as Athens.
Parkinson’s disease is defined as a progressive disorder of the nervous system that affects movement. It develops gradually, expert say, sometimes starting with a barely noticeable tremor in one hand.
While a tremor may be the most well-known sign of Parkinson’s disease, the disorder also commonly causes stiffness or slowing of movement.
Because April is Parkinson’s Awareness Month, on April 15, the support group will sponsor an informational meeting from 12:15 to 2:15 p.m. at the Vienna Public Library.
The meeting will be a chance for people to learn more about the disease and what the group can offer.
Paul Bibbee, a member of the group, said the group has a list of 26 people with the disease and 26 caregivers.
“We have anywhere from 30 to 40 coming to the meetings,” he said.
Ice said a smaller group meets at his home to encourage each other to do their exercises. He said the exercises include ones to help with recall, balance, speech and smiling.
“We do vocal exercises we need to be able to speak clearly since one problem with Parkinson’s you tend to speak lower, saliva is in excess making it more difficult to speak,” he said. “The facial exercises help prevent ‘masking’ where you just look like you are staring. We exercise our mouth to smile; it makes a big difference.”
Ice said Parkinson’s strikes people who are 50 and older, although there are cases of younger people with the disease. Actor Michael J. Fox, for example, had symptoms just before 30 years old in the early ’90s, but announced his condition to the public in 1999.
Bibbee said 20 years ago when he taught at West Virginia University-Parkersburg he noticed the first symptoms of the disease.
“I was trying to help someone with a drafting plate. I had a pen in my hand and I couldn’t hold my hand still,” he said. “I had never noticed that before. I noticed while walking in the sand at the beach, my left footprint was there but my right foot left a scrape in the sand.”
Bibbee said he finally realized there was a problem when he was building a barbed wire fence.
“My arm was so weak I couldn’t hardly hold the hammer,” he said. “Little things like that you pick up on.”
Ice said other common symptoms are the loss of the sense of smell and weakness on the right side of the body and arms not swinging when walking, depression and not being able to hold the tongue still.
“That’s the first sign everybody notices; you’re walking down the street and your arms aren’t moving,” he said.
Chuck Foster said he noticed that same thing in his left arm and he also had a problem putting his left hand in his pocket. They added not all suffering from the disease have tremors.
Foster said he and others carry a card explaining their condition if they are not able to communicate. He said it states they are not intoxicated but they are showing a sign of their disease.
Foster said hospital emergency rooms will at times assume the person is intoxicated. Some people with Parkinson’s do not always get their medication on the strict schedule they need for their medications to work.
“It’s very critical for us,” he said.
Ice said when the medication is wearing off near the time for the next dose, that’s when they may appear intoxicated to some.
“I take my pill in a four-hour cycle and in the last half hour I am down to almost nothing,” he said. “Talk about freezing, I just don’t move.”
Over time they can build a resistance to a medication and have to change. However, they said new medications are being developed.