Claremore Parkinson’s Support Group proves community makes a difference

Mickey Leuthen, Georgiann and Larry O’Mealey, Don and Cathy Fletcher, Betsy and Claude McClendon and Floyd and Margaret (not pictured) Culp met Wednesday to talk about their mutual struggles and share the tips and techniques they’ve learned to cope with Parkinson’s Disease.

Gathered together in a small meeting room Wednesday afternoon, with fresh coffee and chocolate chip cookies, sat nine pained but smiling faces and one tired dog.

The spouses and dog sat quietly, ready to provide a small touch of support on a trembling arm or leg, or to finish a thought that got lost on the tongue.

Meanwhile, five people shared their stories about diagnosis, and the daily struggle of living with Parkinson’s Disease.

Second only to Alzheimer’s, Parkinson’s Disease is one of the most prevalent neurodegenerative diseases in the world, with nearly a million diagnosed cases in the United States.

With no clear cause and no known cure, peoples’ brains gradually stop producing dopamine, leading to tremors, full body stiffness, and trouble doing common activities like speaking, walking, making facial expressions or sitting upright in a chair.

“The most irritating thing about this disease is I never can know from one day to the next what it is going to be,” said Mickey Leuthen. “There is no way to know at the start of the day whether it is going to be a good day or a bad day. I wish there was some set of steps where if I did this, this and this it was going to be okay.”

For everyone in the room, Wednesday was a good day. For the folks who didn’t make it to support group this month, it obviously wasn’t.

Betsy McClendon made it in less than a week out from heart surgery.

Don Fletcher came in with a cough, still recovering from a bout of pneumonia.

And Georgiann O’Mealey walked in exhausted from an exercise class earlier in the day.

But the air in the room wasn’t heavy with misery, as one might expect from all the illness gathered there.

It was lightened by solidarity and faith.

Each person recounted the symptoms that finally sent him or her to the doctor, despite all efforts to ignore their growing problems.

For Mickey, Georgiann and Betsy, it was random tremors in their hands.

“I don’t carry anything liquid in my right hand because I’ll spill it,” Betsy said.

For Don it was full body stiffness so stark that he couldn’t roll a bowling ball.

When Don was diagnosed several years ago, he was told he’d already been suffering with it for several years before.

“All the other symptoms had been there, I just ignored them,” Don said. “It was just the way I was raised. You didn’t go to the doctor unless it was a real emergency because we couldn’t afford it.”

For Floyd Culp, his legs would just freeze up, numb and unable to be lifted off the ground.

His wife Margaret took him to the doctor to get answers after his first fall.

“The old saying is ‘If you’ve met one person with Parkinson’s, you’ve met one person with Parkinson’s,’ because each person’s case is so unique,” Mickey said.

Coping is also different for each person, Don said, but, “In every part that we are failing in, we have to attempt to retrain ourselves.”

“I’m definitely not as active as I used to be, but I know as long as you keep pushing yourself to you limits you’ll be alright,” Don said.

Doctors and scientists are still unsure of what causes Parkinson’s Disease, though there are known links to genetics and nerve agents like parathion and agent orange.

One commonality among all cases, however, is that it is not diagnosed lightly.

“Doctor’s aren’t quick to say it’s Parkinson’s,” Georgiann’s husband Larry explained. “There are a lot of possible reasons for similar symptoms, and they want to rule everything else out first.”

Most people in the group said they were misdiagnosed, or not diagnosed at all, the first time they saw a doctor.

At first, Betsy’s doctor told her, “When your hand writing gets so bad you can’t read it, we’ll start testing.”

“That just wasn’t good enough,” Betsy said.

For each of them, it was when the doctor finally put them in the MRI machine that they got the answers they needed, though for obvious reasons not the answers they wanted.

From the moment of diagnosis, each person in the group and their spouse immediately started in on the homework, figuring out what this new information meant for the rest of their lives.

“When you read all the symptoms, the only thing you can say is it’s scary,” Larry said.

The Claremore Parkinson’s Support Group was created to manage that fear.

Meeting on the fourth Wednesday of each month, 1 p.m. at Claremore First Baptist, the group often has a guest speaker to provide information about the disease or about resources available to patients and their families.

“The neatest thing about this group is even when we don’t have a formal plan, there is comfort in being in a room where people understand you,” Mickey said.

Floyd said people join the group because they want to share in their struggles and triumphs.

“We all understand, and that makes it all worth while,” he said.

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