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Faces of Parkinson’s: Challenges are as varied as the people

Where to donate money for Parkinson's disease research

Michael J. Fox Foundation for Parkinson’s Research

P.O. Box 5014

Hagerstown, Md.

Parkinson’s Disease Foundation

1359 Broadway, Suite 1509

New York, NY 10018

National Parkinson Fondation Inc.

200 SE 1st St.

Suite 800

Miami, FLA 33131

Light of Day Foundation Inc.

Attn: Donations

201 S. Second Ave., Suite 22

Highland Park, N.J. 08904

SALISBURY — Randy Brown says the best way he can describe Parkinson’s disease to others is, “You live slower.”

Brown calls his cane “Lucas,” and he keeps Lucas on his right side, his stronger side, because of his tremors are on the left. The cane helps in keeping him steady.

“Lucas, my cane,” Brown says, always hoping someone will catch the reference to the Lucas McCain character in the old television show “The Rifleman.”

Brown depends on humor a lot. When he leads a monthly meeting of the Parkinson’s Disease Support Group in Salisbury, he tries to include several jokes to which all the members and caregivers can relate.

Diagnosed with Parkinson’s in 2007, Brown laughs that his dog still doesn’t understand in the mornings why it takes him so long to reach the back door.

Peggy Wilson, whose husband, Bob, has been coping with Parkinson’s for a dozen years, joins Brown in providing leadership for the support group that meets at 1 p.m. every first Tuesday of the month at First Presbyterian Church.

Wilson constantly advocates for Parkinson’s disease funding, research, education and awareness — especially awareness.

“I just want people to know about Parkinson’s,” she says, “and I think that’s the way to a cure.”

A million Americans and 7 million to 10 million people worldwide have Parkinson’s disease. The number of Americans living with Parkinson’s is more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy and Lou Gehrig’s disease.

About 60,000 people are diagnosed as having Parkinson’s every year.

“I suspect there are a lot more people who don’t know they have it,” Peggy Wilson says, adding it can sometimes go years without being properly identified.

Parkinson’s disease is a chronic and progressive movement disorder connected to the malfunction and death of neurons — important nerve cells in the brain.

Some of those dying neurons produce dopamine, a chemical that sends messages to the part of the brain controlling movement and coordination. As Parkinson’s progresses, the amount of dopamine produced in the brain decreases, and it leaves a person unable to control movement in normal ways.

There are four key symptoms: tremors, slowness of movement, muscular rigidity or stiffness and impaired balance and coordination.

The diagnosis usually comes from neurologists with special training in assessing and treating Parkinson’s and from movement-disorder specialists. The way people walk, how their fingers move and their speech patterns are clues, along with handwriting, the loss of smell, restless legs, vivid dreams, interrupted sleep, pain, constipation, confusion, fatigue and depression.

About 70 percent of people with Parkinson’s experience depression, Peggy Wilson says.

What’s the root cause of the disease? Genetics? Environmental factors? Injury?

“Everything’s on the table,” Wilson says.

Not much has changed over the years in the treatment of Parkinson’s, other than maybe the delivery systems for medications. Levodopa is the most widely prescribed, though patients often take several other medicines to manage their disease daily.

When people have stopped responding to their medications, surgical options such as deep-brain stimulation are considered, though it’s often only effective and recommended for a small percentage.

Most of the populace would guess that Parkinson’s usually manifests itself in white males in their late 50s and early 60s. Brown, 66, is the prototypical case.

But Wilson spends a lot of time in her advocacy efforts trying to change that perception and show Parkinson’s can strike at a younger age and that women are just as susceptible.

“The need for awareness is there,” she says. “Most people think that a little tremor is what it’s all about. That is about 1 percent of the problem.”

The way it affects someone is different from person to person, That’s why the local support group, started years ago by Dee Williams, is important.

“It’s a group you can tell your story to,” Wilson says. “People feel very comfortable sharing.”

The support group has arranged for Wendall Woodall, a teacher and pastor, to appear at the Literary Bookpost at 3 p.m. Saturday, April 25. Woodall is dealing with early onset Parkinson’s and has written a book titled “Shuffle” to describe his experiences so far. (See the review on page 5D.)

Woodall’s appearance connects to a mantra Peggy Wilson believes with her whole heart: The story of Parkinson’s disease has to be told through people.

•••

Randy Brown says he might have an “on” day when he thinks he could run a 5K race. But on his “off” days, it’s best for him to stay home and lie down.

Body stiffness and movement are the biggest issues for him. He sometimes experiences a freezing in his gait, in which he involuntarily stops walking and can’t move. It often happens as he approaches narrow passages, doorways and dark rooms, and “I know I’m not afraid of the dark,” he says.

The danger then becomes losing his balance and falling forward.

Brown takes 16 pills for his Parkinson’s over four different times of the day, including a megadose at night. Parkinson’s patients need to get their meds on time, Brown says, and that often becomes a great concern during hospitalizations when treating doctors and nurses are not cognizant of the regimen they must follow.

It’s as though a curtain comes down each night before Brown goes to bed.

“You just wind down like a toy,” he says.

But getting a full night’s sleep is usually impossible. Brown often wakes up between 1 and 1:30 a.m. and might stay awake, rattling around the kitchen for a couple hours or spending time on the computer.

Brown is a retired General Electric supervisor and a computer teacher at Rowan-Cabarrus Community College. He also traveled the country extensively for two software companies.

Brown has added some railings at his house to help with getting around, and he sees the day coming when he might need to install ramps.

He still sings in his choir at St. Luke’s Reformed Church and thinks it’s important for people, after they receive their Parkinson’s diagnosis, not to withdraw from life.

He diligently tries to exercise his brain daily on the computer or with newspaper crosswords. His handwriting has gotten progressively worse, and he now has his wife, Linda, sign many things for him.

“My wife is the other half of my brain,” he says.

Back to the humor: Linda Brown laughs, reminding Randy how sometimes, without his realizing it, his head moves back and forth in a rhythm.

That’s when Linda says, “Randy, you’re being Stevie Wonder again.”

•••

Dorothy Culbertson of Cleveland doesn’t allow herself to have a pity party.

She serves as a worship leader at church. She attends yoga classes twice a week. She seldom relies on a cane, except maybe to walk up a steep hill at home.

Her husband gives her great emotional support and has ever since she was first diagnosed with Parkinson’s disease.

“He doesn’t believe in giving up,” the 64-year-old Culbertson says.

And neither does she. Her mother is a double amputee, so her own fight with Parkinson’s seems minor to Culbertson in the grand scheme of things.

“You  know I can’t give up,” she says. “I won’t give up. I won’t give out. I’ll keep trying.”

Culbertson says tremors started on her left side in 2003, along with a general fatigue and slowness.

“I thought I was just lazy,” she says. She also was dealing with acid reflux, and Culbertson had read that a side effect of her medication for that could be tremors.

Meanwhile, Culbertson kept working full-time in the home decor department of Lowe’s, walking the floor all day. But she remembers the date — July 16, 2003 — when she knew something was seriously wrong.

“I couldn’t walk any more,” Culbertson says.

She had reported to work that day at 5 a.m. because of a shipment, and at 9 a.m., she went to her car to eat an early lunch when she realized she had to go to the doctor as soon as possible.

“His question to me was, are you waiting to die?” she says.

The diagnosis of Parkinson’s disease came quickly, but Culbertson kept working at Lowe’s until 2010 when she turned 60 and the neuropathy pains in her feet were too much to bear.

For many years, she struggled in trying to find medications that she could deal with, while still trying to work.

“It either killed my gut or knocked me flat,” Culbertson recalls. She took notes on the different combinations until she found something she could tolerate. Culbertson now takes pills three times a day, always at the same times.

Her quality of life has diminished in bits and pieces. She can’t drive at night, and she no longer walks great distances, which is a change given that she used to walk so much at work, besides doing it for exercise.

But she remembers things being worse until she figured out her medications. And that day in 2003 sticks with her.

“I call myself a miracle, because I’m a lot better than I was,” Culbertson says.

•••

The fatigue came first for Bob Wilson, but he never connected it to the diagnosis of Parkinson’s disease that arrived later.

About two years after his retirement in 2000 as a Salisbury dentist, Wilson experienced his first tremor. X-rays ruled out a brain tumor, but a neurologist determined he had Parkinson’s from all the traditional movement tests.

The tremors started in his left thumb and eventually spread to his whole left side. Now they also affect his right side. Sleeping has become more difficult because he’s unable to turn in bed, and as with many Parkinson’s patients, he experiences vivid dreams.

But Wilson has found a sleep medication that hasn’t come in conflict with his pills for Parkinson’s.

The disease has robbed Wilson of an important passion — flying. The Vietnam veteran had been a licensed pilot since 1967, but the Federal Aviation Administration has a list of medications pilots are not supposed to take, and eventually Wilson graduated to one that was on that FAA list.

He sold his plane.

When people notice he’s dealing with tremors, which are constant, they often try to look the other way, Wilson says.

“You’re different — they know you have something going on,” Wilson says. “That’s OK, I understand that.”

Wilson, 75, says exercise is important to anyone with Parkinson’s disease. He says he golfs with an understanding group of guys who tolerate his condition, while he copes with his much higher scores.

He feels fortunate he can still drive, eat and walk about a quarter of a mile daily to pick up the newspaper. His handwriting has deteriorated considerably, and he lost his sense of smell many years ago.

But he has been able to avoid, for the most part, the depression common with many others in his boat.

“There’s always something positive to think about, and I have a good family and good support,” Wilson says.

Wilson served as a dentist in the U.S. Army for two-and-a-half years, and he was exposed to Agent Orange while in Vietnam. He and his wife often have wondered if that led to his Parkinson’s later in life.

Wilson takes two different drugs four times a day, and he has been a willing participant in clinical trials at Duke University Medical Center and with Dr. Dennis Hill, a Salisbury neurologist.

“I’m still hoping for the cure for somebody,” Wilson says.

 •••

Former Army Ranger and Iraqi war veteran Jonathan Morris spoke at the most recent meeting of the local Parkinson’s Disease Support Group. It turns out he was one of them.

After an 18-year break from an earlier four-year stint in the Army, Morris returned to the service in 2006 and soon was involved in training Iraqi forces. Walking point one day during an operation, Morris took three rounds in his body armor, knocking him down and breaking four vertebrae.

But his biggest injury came from the explosion of a rocket propelled grenade, which hit a wall behind him. For a long time, he couldn’t walk, talk, eat or hardly sleep from his traumatic brain injury.

Morris was left with three aneurysms in his head. Of those, two dissolved within a year, and the other disappeared about two years ago, says Morris, who is considered 100 percent disabled.

He would cope at times with serious depression.

About two to three years ago, Morris noticed he was having tremors and rigidity in his muscles, so he visited a movement-disorder specialist at Wake Forest Baptist Medical Center in Winston-Salem.

There are typically eight markers the specialist looks for, Morris said, and if there are two or three, he usually diagnoses the patient as having Parkinson’s disease.

“Well, I had all of them,” Morris said.

It only took five minutes into the visit for the diagnosis.

Morris now takes two pills three times a day for the disease, along with a controlled release of medication at night.

For himself and others with Parkinson’s, Randy Brown says, the scariest part is always the future.

They know — because the disease keeps telling them — that tougher physical challenges wait for them down the road, and the living will keep getting slower.

Contact Mark Wineka at 704-797-4263, or mark.wineka@salisburypost.com. To learn more about the Parkinson’s Disease Support Group, contact Peggy Wilson at 704-633-3181, or Randy Brown at 704-213-6404.

 

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