Patti Gale wasn’t always the way she is now: confined to a wheelchair, her hands shaking and panicked when her husband is out of sight.
Bill Maurer was a science professor at the College of Central Florida. He was a long-distance runner and travelled. He was not always confined to his home. He didn’t always need his wife to button his shirt or tie his shoes.
Stewart Grumbling didn’t always need a cane to walk. The former owner of an Inverness print shop didn’t need to wonder how to slow down his Parkinson’s disease. He was healthy and active. He enjoyed running and water skiing.
There are a million Americans who suffer from Parkinson’s disease, for which there is no cure, only drugs to try to slow its relentless progression. They will be 1.2 million by 2030.
People are usually diagnosed when they are in their 60s.
Many patients with Parkinson’s complain of feeling emotionally left on their own to cope with the disease after being diagnosed.
In Citrus County, they don’t need to go by themselves.
Bravera Health Seven Rivers Hospital in Crystal River offers their monthly Parkinson’s Support Group. Suspended due to the coronavirus pandemic, the hospital has resumed meetings where hospital staff host guest speakers and provide a place where patients with Parkinson’s disease can talk to each other, share their way of coping with the disease and discuss new treatments.
Gale, 67, and a former office manager for her husband’s auto repair shop, Maurer, 82, and a former teacher, and Grumbling, 63, and a former printer and construction worker, have the group in common of Bravera support.
“Maybe I can contribute something in the years I have left,” Maurer said. “Maybe I can learn something from (the support group).”
Grumbling attended the meetings and also participates in a free stationary bike class at the Lecanto YMCA offered to people with Parkinson’s disease.
Grognard exercises and eats healthy, but says a lot of how you cope with illness comes down to a person’s mental approach and attitude.
Sometimes he doesn’t want to get out of bed because Parkinson’s makes it too difficult.
“But I say get up. Continue. Find a sponsor,” advised Grumbling. “You have to have a goal”
People with Parkinson’s need emotional support, he said, and that’s where a support group is important.
At Bravera meetings, he is reminded that others have Parkinson’s disease. There he can share his experiences with the disease, being misdiagnosed for years and later coming to terms with the disease.
Although doctors are familiar with Parkinson’s disease, most have not experienced it firsthand.
Patti Gale and her husband, Gary, recall the doctor’s visit when they learned of Gale’s diagnosis.
The doctor prescribed medicine and said ‘call me if you need me,’ the couple recalled. It was a low point in their lives.
Many people with Parkinson’s complain that they feel abandoned and their future is uncertain after their diagnosis, with the exception of an occasional visit to the doctor to monitor the disease.
“I never had any experience with Parkinson’s disease…before that,” Maurer said. “It was pretty scary. It’s terminal and you don’t know how fast it’s going to progress.
Parkinson’s disease is a disease in which part of your brain deteriorates. The disease is best known for its effects on muscle control, balance, and movement.
When you have Parkinson’s disease, your brain does not produce enough dopamine, an important neurotransmitter.
So when your brain sends signals that tell your muscles to move, it fine-tunes your movements using cells that need dopamine. But without the chemical, your movements stall.
As Parkinson’s disease progresses, the symptoms get worse. The tremors become frequent and more severe. Later stages of the disease often cause dementia-like symptoms.
Medicines help, but it is only a temporary solution.
This is where the support group comes in.
When Nurse Victoria Lycans took over the group, attendance had dwindled. Bravera hospital chiefs tasked her with making the service relevant again.
“I kept going because (the contestants) stole my heart,” she said. “It’s so hard to see what they’re going through. Knowing that I can give them this little happiness… it’s important.
The group meets at the hospital on the third Thursday of each month, from 3 to 4 p.m. The Lycans can be reached at 352-795-0534.
The group has guest speakers and participates in activities like chair yoga, dancing, and disease talk.
“It’s the only thing that keeps them coming, more than what they learn at their doctor’s office,” she said.
“Their most common fear is that of the unknown. What will happen to them? “, she said.
“When you can talk with someone who’s going through the same things as you, it helps,” Lycans said.
When the meetings were canceled because of the pandemic, many still wanted to come, despite the risks.
One of the hardest things about Parkinson’s for Maurer is “I feel like I’m losing things: going camping, boating, working on the lawn…visiting my kids. “
Illness eats away at your life, he says. And the people best placed to understand this are those who experience it as well.
He tries to make his mind work, so he reads about science, works on puzzles and crosswords.
He said the support group helps him prepare for any symptoms that may come next.
Since November 2021, Patti Gale has not slept in her bed. She sleeps sitting up in her wheelchair, usually with her head on a table.
In 2010, Gale had breast cancer and mastectomies.
Five years later, she and her husband Gary were having breakfast at a Denny’s restaurant.
“I asked (Gary) if you see my head shaking,” Gale said.
Gary couldn’t see but his wife insisted she feel him move.
Within a few months, she had balance problems. She went to see a neurologist and after some tests he told her the bad news.
In 2018, Gale was in severe pain and anxiety and found herself in multiple ERs trying to get relief. On November 5, 2021, during one such visit, she sat in a wheelchair and did not come out.
She takes levodopa and carbidopa, the most commonly prescribed drugs for the disease.
She places her shaking hands near his chest to stop their shaking. She rarely wants to go out in public because she is afraid of people watching or laughing.
“We have an existence now…not a life,” her husband said. ” I can not do anything. I can’t go anywhere.
She said she asks God what she did wrong to deserve this.
Grumbling had symptoms of Parkinson’s disease years earlier, but they had been misdiagnosed. Even when he was correctly diagnosed, he ignored the symptoms until he ended up in hospital.
“I should have gotten help long before,” he conceded. “But I didn’t want to face it.”
He still considers himself blessed.
“I’ve lived a good life. I met great people. I often laughed,” he said. “What God is asking me to do now is to help others.”
Gale, Maurer and Grumbling don’t want other people with Parkinson’s to go through this alone.
They hope there will be new treatments.
“We encourage each other,” Grumbling said. “Get help right away…and know that you’re not the only one with Parkinson’s disease. Get help from others.