Support, exercise key to battling progressive nervous system disorder
Frank Posey
Tillie Winfield puts socks and shoes on her husband George every morning. She handles most of the everyday household tasks, even those that involve tools like a screwdriver or a hammer.
“You don’t realize what you can’t do until you’re there,” she said. “He handles it better than I do; he’s never angry, he’s always very calm. It could make you angry at life, but he doesn’t show that at all. He’s better and more capable at doing everyday life than I am. He’s really a great guy.”
George Winfield, 79, was diagnosed with Parkinson’s disease in 2007 after he complained about being tired, not having enough energy and feeling pain in different areas of his body.
Parkinson’s is a chronic and progressive movement disorder that affects the nervous system. The symptoms continue and worsen over time. According to the Parkinson’s Disease Foundation, there are 1 million people in the United States living with it.
Symptoms vary greatly but predominantly include tremors, trouble with balance, stiff muscles and difficulty walking. It can eventually lead to dementia.
Though George Winfield didn’t have the telltale sign of tremors at the time of his diagnosis, he began having them five years ago. “He’s worse now,” Tillie Winfield, 78, said. “He has a hard time doing anything using his fingers. It’s very difficult.”
Tillie Winfield said the disease’s slow progression gradually has robbed her husband of his ability to complete everyday tasks. Some mornings, he needs help getting dressed.
“It’s not just about getting old,” she said. “The tremors get worse and that causes a lot of problems.”
George Winfield formerly worked as a manager of Sears department stores and the couple lived in Arkansas, Tennessee, Alabama and North Carolina before settling in Virginia.
“He was always so strong and very active as far as doing anything,” Tillie Winfield said. “He always did the heavy lifting and he can no longer do that.”
In September, the couple moved from a five-bedroom, three-bath home on 23 acres in Amherst County, where they lived since 1994, to a more manageable three-bedroom home in Madison Heights.
Tillie Winfield said the couple’s former home had a garden and several fields that George Winfield would mow himself.
She said they enjoyed having so much space to themselves.
“We had to get rid of a lot of stuff, that was the hardest part,” she said.
Some of those items included photos and other personal belongings that they gave to their four children.
“We were not able to take care of things anymore because of his disease,” she said. “It had gotten to the point that we were not able to do as much.”
Though the relationship has changed, she and her husband still love each other dearly.
“We have other things to deal with and we just deal with it. You don’t have a choice,” she said.
She said the disease taught her to learn how to deal with the cards life has handed her.
“You have no choice but to deal with whatever God gives you,” she said. “So that’s what we do. What else can we do?”
A local support group helps them deal with the challenges together.
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The Lynchburg Parkinson’s Support Group meets every third Tuesday at 2 p.m. at The Summit in Wyndhurst. What began in 1986 with about 15 caregivers and patients has grown to a mailing list of 70.
The group offers a space for patients and caregivers to interact, talk about their situation and get updates on the latest Parkinson’s research. Speakers have included physicians, therapists, pharmacists, psychologists, religious leaders and other experts who can shed some light on ways to cope with Parkinson’s and its symptoms.
George Winfield’s doctor advised him to avoid the group when he was diagnosed.
“He thought that by going in the early stages that he would see people who were in the last stages and it would affect him,” Tillie Winfield said. That never happened and the couple continues to go, learn new things and make new friends.
“The support group is wonderful,” Tillie Winfield said. “We have learned how to deal with certain things. Difficulties are every day and the discussion groups help us find out how other people take care of certain things.”
For example, she said, the group helped her husband learn how to better cut his meat and hold his utensils. Something as simple as grasping a spoon has become increasingly difficult.
Wendy Posey, 63, leads the group. Her husband of 37 years, Frank, was diagnosed with Parkinson’s in 2002.
She was an office manager for a doctor in Pennsylvania when the doctor noticed changes in Frank Posey’s balance.
“The neurologist made it sound like it was no big deal,” she said. “It wasn’t until my friend told me I wasn’t taking it seriously. She bought me a book to read and said, ‘You need to be on top of this’ and I’m so grateful to her.’”
Frank Posey worked in computer sales management for 30 years. He retired four times from different computer sales jobs and once from teaching higher levels of math to a home school group in Lynchburg, where he taught for eight years.
He even served as a Boy Scout usher at Dwight Eisenhower’s inauguration.
Fifteen years after the neurologist visit Frank Posey displays some of the most common symptoms including tremors and trouble with speech and balance. Sometimes he freezes and can’t move, feeling paralyzed.
According to the National Parkinson Foundation, most patients’ symptoms take years to develop.
There is currently no cure, but there are many medications to help maintain quality of life. The average onset age for the disease is 60 years old; it strikes 50 percent more men than women.
“You’re not going to get better from it,” said Posey, who is upbeat, chatty and extremely positive despite the diagnosis. “Parkinson’s isn’t going to kill him, but one of the results from it will.”
After he suffered from a stroke in February last year, Wendy Posey gave her husband a choice.
“I’m not going to make you fight this disease if you don’t want to, but if you want to fight, buddy you’re going to work,” she told him.
And work he does at the Jamerson YMCA three days a week with a personal trainer. While Wendy Posey sits in the lobby reading a book, Frank Posey, 76, uses his walker and walking sticks to move between each station at the gym.
When he’s not training he’s riding a stationary bike or lifting weights.
“Before I got Parkinson’s, Wendy and I did a lot of hiking and biking and biking was the last thing to go,” he said. “I was looking for something else to do.”Speaking softly, as he now does because the disease has weakened his vocal chords, Frank said the good days outweigh the bad. His philosophy is simple: bullies can’t win and in his mind, Parkinson’s is a bully.
“You have two choices with Parkinson’s. You can let it win or you can fight it, and I’m gonna fight this,” he said.
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Pat White is using the YMCA and the support group to fight the disease, too.
Her husband Jimmy White, now 84, led the Lynchburg Parkinson’s Support Group for a decade before passing the torch to Posey a few months ago.
Pat, 82, was diagnosed with Parkinson’s 50 years ago. The couple has been married for 63 years.
Pat White was only in her mid 30s when diagnosed. She was frustrated when her legs began trembling and she didn’t feel up to attending her kids’ after-school extracurricular activities, like baseball games.
“That was one thing that always bothered me,” she said. “I didn’t feel like going. My nerves were so bad and it was uncomfortable.”
She said that the symptoms come and go and are unpredictable.
At one point she was able to go shopping frequently, but now only goes from time to time.
“I go when I can but most of the time I stay home,” she said.
She said just to get dressed can be exhausting.
Sometimes she has plain trembling in her legs and other times, if she takes her medicine too early before she eats, she gets dyskinesia, which is caused by certain Parkinson’s medications that cause involuntary movements.
She remembers going shopping one day and trying to cross the street but her legs wouldn’t move. She said she was frozen until her husband helped her.
“It’s embarrassing and scary,” said Pat, who even after decades with the disease worries what people think when her legs tremble. She has broken both of her shoulders and two toes as well as cracked a rib during separate falls.
“Once you start falling there’s no stopping it, you just go down,” Jimmy White said. “You’re limited in so many things that you can’t do or are afraid to do.”
He said it’s important for caregivers to make time for themselves and to go out and run errands.
“Caregiving is a tough situation sometimes. It’s a tough road. I try not to leave her at home by herself. If I go somewhere I try to have someone available to sit with her.”
The White’s encourage anyone with the disease to try out the support group because of all the good it has done their family.
“Come and be active and try to maintain a positive attitude,” Jimmy White said. “It’s a degenerative disease and unfortunately you don’t get better as time goes on but you can put off the inevitable by remaining active. Exercise is the key to the whole thing.”
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Exercise is medicine, according to YMCA Parkinson’s Wellness Recovery Moves fitness class instructor Terry Brame.
“Exercise is very, very important for Parkinson’s,” she said, explaining that exercise helps to slow the progression of the disease.
The eight-week class at the Jamerson YMCA meets on Tuesdays and Thursdays at 1:15 p.m. About 13 people attend on a regular basis, and most of them also attend the support group.
It focuses on posture, balance, twisting and large movements.
Brame, who has been working with Parkinson’s patients for two years and has a certification to teach the class as well as a personal training and senior fitness certification, has seen improvement from patients who have joined the class.
George Winfield completed a six-week workout course last week at Lynchburg College that specializes in exercise for those with Parkinson’s.
Tillie Winfield said the class made a big difference. Even though his back is still slouched over, her husband can hold his shoulders back better.
“Exercise is really the most important thing that any Parkinson’s patient can do,” she said.
Exercising has changed Clellan Berry’s outlook on the disease and slowed her symptoms.
Berry, 69, was diagnosed 10 years ago and fell into a depression.
“I thought I wouldn’t be good to anybody,” she said. “I couldn’t even carry a bowl of water to the dogs without it splashing everywhere.”
She works out at the BWX Technologies gym in Mt. Athos, where her son is an employee.
She does planks, kettle bell lifts and walks on the treadmill. She has been a participant of the Virginia 4-Mile Walk for five years now.
She describes herself as hard-headed and determined.
“You get it before it gets you. You get a hold on it and don’t give up,” she said. “It’s not a death sentence. You can deal with it and be strong.”
http://www.newsadvance.com/news/local/living-with-parkinson-s/article_6ee3b21d-540d-5196-86c5-3106bc0dbd78.html
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