Support, humor help those with Parkinson’s
Sue Mayfield Geiger
Galveston Daily News -
“You have to laugh when your birthday present is a bathroom remodel with grab bars and an ADA-approved toilet,” said Kathy Harlan, a Clear Lake area resident who has lived with Parkinson’s disease for more than 13 years.
An avid tennis player, world traveler and general go-getter, Harlan first noticed something was wrong when her tennis game deteriorated.
“I would hit the ball slightly off center and the service toss was inconsistent,” she said. “I look back at pictures from a few years previous to diagnosis, and I can see other symptoms — slump, uneven gait and crooked smile.”
Parkinson’s is a neurodegenerative disorder, or more specifically, a movement disorder, according to the Houston Area Parkinson’s Society, which works to provide about 22,000 people living with Parkinson’s disease in the Houston area with resources — exercise therapy and support, social services and education.
Coping Through Humor
More than 1 million U.S. residents are living with a Parkinson’s diagnosis. Primary symptoms include tremor, stiffness of the limbs and trunk, slowness of movement and impaired coordination. Parkinson’s affects both men and women.
While the average age of onset is 55, 15 percent of those diagnosed with Parkinson’s disease are younger than age 50, according to the society. Early symptoms are subtle and occur gradually. As the disease progresses, the symptoms begin to interfere with daily activities, making even the most mundane tasks, such as tying shoes, a challenge.
Despite difficulties posed by the disease, Harlan has kept her sense of humor. Friends, family and a support group also help her manage.
“My hands don’t work so well to put on shoes,” Harlan said. “Three friends — one on crutches following hip surgery — took me shoe shopping. As I sat on the stool at DSW, one friend squatted down to help. However, she couldn’t get back up, so another lady bent down to help her up, and she tipped over, pulling all three of us onto the floor.
“The manager came rushing over to see why three women were lying on the floor, laughing hysterically and the person leaning on crutches was laughing so hard she was in imminent danger of falling down with the others.”
Harlan, who depends on an electric lounge chair that lifts her straight up into a standing position, credits her husband, Charlie, for being her support system.
“He scratches my back when it itches because I can’t reach it,” she said. “He does everything from cooking to cleaning to laundry, vacuuming and grocery shopping. But more importantly, he makes me feel like I am still valuable and loved.”
One of the most difficult tasks Harlan faces every day is getting out of bed. But once she’s up and moving around, she’s ready to go — mainly because of her support group through the Houston Area Parkinson’s Society.
“We meet once a week for speech therapy and exercise,” Harlan said. “Parkinson’s patients usually speak softly and become hard to understand. People stop and look when they hear a bunch of old people going oooohhh, eeeeeeeee, ahhhhhhh — soft to loud, fast to slow, low to high. We answer trivia questions, read tongue twisters and tell stories about our lives. We know the others in the group understand our fears.”
Support also is available through Gulf Parkinson’s Source, a nonprofit serving the Galveston County area. Gulf Parkinson’s Source works to improve the quality of life for people with Parkinson’s disease through advocacy, education, exercise programs, outreach and peer support.
Study after study shows that exercise, even low-intensity, may combat the effects of Parkinson’s disease and improve mobility and gait.
“When I was in good, athletic shape, people doing sitting exercises seemed ridiculous,” Harlan said. “Now we are worn out after an hour of tossing a plastic ball with one hand and catching it with the other, lifting 1- to 6-pound weights, stretching with plastic bands, exercising each muscle from the fingers to the feet, spelling air words with our noses.”
Magic Of Velcro
The simple day-to-day tasks, such as dressing or bathing, have become tedious for Harlan.
“Buttons and shoelaces are out — no-iron fabrics are in,” she said. “Velcro is the magic material that fastens shoes, skirts and pants. Slipover shirts and blouses are necessities. Earrings and jewelry require a little fastening help.”
The progression of Parkinson’s is inevitable.
“We will not get better, although an improved medication now and then relieves some symptoms,” she said.
Sometimes the medications are a trade-off between muscle weakness and dyskinesia, the inability to control muscles, which is a side-effect of some Parkinson’s medication.
One of the most difficult issues for Harlan was to give up driving.
“Not driving is disappointing, particularly since I am still active, want to see people and have grandchildren I would like to take places,” she said. “Charlie drives me when I want to get out, and waits while I have a haircut, dental appointment, pedicure, etc., but sometimes I just want to go somewhere by myself ...”
Still, good friends and a sense of humor make life good — with or without Parkinson’s disease, Harlan said.