Support helps Parkinson's patients, caregivers to forge ahead
“God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”
The serenity prayer brings comfort and focus to Shirley and Tom Haley as they face each day.
The Haleys are not spending their golden years the way they had planned. They had wished to travel around the country, visiting their children and grandchildren, and to continue the active social life they once enjoyed.
Instead, the Washington Township couple looks forward to Fridays, when Shirley has her weekly appointment at a beauty salon while Tom runs errands.
Friday provides a break in the routine that came with Shirley's diagnosis of Parkinson's disease.
Shirley, 77, was diagnosed with the neurodegenerative disease in 1994. Parkinson's disease occurs when the neurons within the brain that are responsible for producing the chemical dopamine become impaired or die. Dopamine is essential for the smooth control and coordination of the movement of voluntary muscle groups.
There currently is no cure for Parkinson's, but symptoms can be alleviated through medications, therapies, and, in more advanced stages, surgery.
The Haleys' day-to-day life revolves around Shirley's medication schedule. She takes four separate medications to manage her Parkinson's, some as often as every five hours.
“Every day is 24 hours when you're taking care of someone with Parkinson's,” says Tom, 78, Shirley's primary caregiver. One day and two mornings each week, a neighbor gives Tom relief by acting as Shirley's nurse.
Sleep comes in small increments, a few hours at a time. He administers medicine to Shirley in the middle of the night, and also helps her to the restroom a few times during the night.
Tom helps Shirley get situated when she rises at 5:30 each morning and her medications have started taking effect. Shirley fixes herself a simple breakfast and reads or works crosswords puzzles while Tom tries to catch a couple more hours of sleep before their long day begins.
Between doses of medications, Tom leads Shirley through the exercises she has learned in physical- and occupational-therapy sessions.
Shirley still performs some of the activities she's enjoyed during their 57-year marriage. She loves to cook and bake, and does so now with Tom's help.
Her all-time favorite activity, though, is ironing. Tom adjusts the ironing board to a low level so that Shirley can sit on the sofa in her favorite room — a Steelers-theme TV room.
“I get set up there, and I can see both televisions, the one in the Steelers room and the one in the living room, and I just iron,” Shirley says with a twinkle in her eye.
“I like to work; I don't like to just sit,” she says.
Shirley is able to move around their ranch-style home, with railings installed along the hallway connecting the bedroom to the living room and kitchen area. Tom's always is near, in case she turns too suddenly and loses her balance.
“She isn't supposed to walk with anything in her hands so that she can grab onto a railing if she needs to for stability,” Tom says.
One day a few years ago in their former home, a four-level home in Allegheny Township, Shirley lost her balance on a staircase, fell down the steps backward and hit her head on a door jamb. She had a concussion.
The Haleys promptly found their current home in an over-55 community.
The doorways are wide enough for a wheelchair, if the need ever arises.
Tom has made modifications to the home. In addition to installing the hallway railing, some extra handrails were placed in the bathroom and at the one step leading up to their porch. He lowered the shelves in their closets, so Shirley doesn't need to stretch to reach items and would be able to access them if she ever needs to be in a wheelchair.
Balance is the biggest challenge Parkinson's has brought, and Shirley still falls from time to time. She has learned a technique to fall more safely, landing on her derriere.
The physical symptoms of Parkinson's disease are sometimes almost undetectable to people who don't know Shirley, Tom says.
The tremors associated with the disease were unnoticed during a recent visit with a reporter.
“We've been able to slow down the effects of Parkinson's with the right medications and the right physical and occupational therapies,” Tom says.
The rate at which the disease progresses varies from person to person.
Carolyn Stanisauskis, 65, of O'Hara was diagnosed with the Parkinson's four years ago.
Her first symptom was the tell-tale hand tremors.
“I never even thought that it would be Parkinson's,” she says.
She was at her doctor's office for a routine visit when he suggested she go to a neurologist to be checked.
“As soon as he saw me walk down the hallway, he could tell it was Parkinson's,” Stanisauskis says.
People with Parkinson's often walk leaning forward.
She was started on Sinemet, a drug for Parkinson's patients that serves as a substitute for natural dopamine in the brain, easing movement.
“My Parkinson's has had very slow progress — I'm really fortunate,” she says.
Stanisauskis has lost her balance and fallen a few times, and uses a cane when she's out of her house.
It takes a lot of effort to get dressed, to put her arms into blouses and jackets.
Her biggest complaint is with her fine motor skills. Tasks like stuffing papers into envelopes are daunting.
“I used to have beautiful handwriting — people would compliment me on it,” she says. “Now, by the end of the day, my handwriting is horrible.”
Stanisauskis is a cancer survivor and had double bypass surgery last year. She had been the caretaker for her ill husband, Clement, but he died within weeks of her heart surgery.
Although devastated by his passing, she is now able to fully focus on her health. She plans to sell her two-story home and move into a small apartment this summer.
Still able to drive, Stanisauskis travels to HealthSouth Harmarville Rehabilitation Hospital for Parkinson's support-group meetings once a month.
The Haleys attend the same meetings, coordinated by HealthSouth registered nurse Pat McGreal.
“Parkinson's is a difficult disease to deal with, and the support group gives patients a chance to socialize with other people dealing with common issues and symptoms,” McGreal says. “It's good to share and find out how others are coping with it.”
Support groups offer educational talks from guest speakers including David Von Hofen, director of Programs and Outreach at the National Parkinson Foundation Western Pennsylvania in the North Hills. He says the foundation sponsors a number of support groups in the Pittsburgh region, as well as exercise programs and classes for those with Parkinson's.
The Parkinson Primer is a four-week class for patients who were recently diagnosed. “Powerful Tools for Caregivers” is a six-week program designed for families and friends of Parkinson's patients that will teach caregivers how to take care of themselves.
The Haleys attend the HealthSouth support group together, and Tom was the coordinator.
The patient and the caregiver have to learn as much as they can about the disease, he says, and play an active role in figuring out which medications and therapies work best for them.
“There is no cure, so you have to learn to live better with Parkinson's,” he says.
Jill Henry Szish is a contributing writer to Trib Total Media.