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Health

New group benefits Parkinson's disease patients

| Monday, May 5, 2003

Ralph Adams enjoyed his glory days playing basketball and football, then teaching history and coaching at Balwin Wallace College in Berea, Ohio, and Case Western Reserve in Cleveland, Ohio. He also was a scout for the Los Angeles Rams and a statistician for the Cleveland Browns.

But on a recent afternoon, from his wheelchair in the community room of Weatherwood Assisted Living Residence near Greensburg, he had a hard time tossing a small basketball into a plastic trash can.

Adams, 88, is the oldest participant in the Parkinson Wellness Program at the facility, the fifth such group established by the Parkinson Chapter of Greater Pittsburgh and the first in Westmoreland County. The ballgame was part of the recreation, exercise and socialization designed to benefit patients with Parkinson's disease.

It's difficult for his daughter, Karen Supra, of Belle Vernon, to witness the toll that the progressive disease took on a man who was once so athletic.

"This program has made a difference for him," she said. "He realizes the direct relationship it has to his health and well-being, and he sees that he's not alone in having to deal with this disease."

The local chapter started its wellness program in 2001 with start-up grants from the Jewish Healthcare Foundations, the Love Family Foundation and the PNC Charitable Trust Committee. The initial groups still meet in South Hills, Squirrel Hill and Monroeville in Allegheny County.

"They were really successful and we took that data to the Highmark Foundation, and they gave us $125,000," said chapter outreach coordinator Judy Talbert.

One new site is in Washington, Pa. The other, near Greensburg, attracts up to 20 people for the Monday and Friday sessions.

Several participants are Weatherwood residents. Some of the others drive themselves to the meetings because the symptoms, progression and limitations are different in everyone.

"You cannot say that if you've seen one patient with Parkinson's, you've seen them all," Talbert said. "Not everyone has tremors."

Although that's the most recognizable symptom, according to the National Parkinson Foundation, 30 percent of those afflicted do not have tremors. They may have rigidity of the limbs that simulates arthritis, or the most prominent and disabling symptom of slow movement of the limbs and body. Early symptoms can include a reduced sense of smell, reduction of body movements, difficulty walking, and a lack of facial expression and infrequent blinking.

Those with instability of postural reflexes fall because they have trouble catching themselves if they stumble. Patients may take short or slow steps, have a tendency to run, or to be propelled forward or backward. They may even "freeze" in their movements. Medications can relieve symptoms. Other cases improve with surgeries that destroy part of the affected brain, stimulate the brain, or transplant certain cells to replace lost cells.

"We do know that exercise is good for these patients," said Rosemary Slivka, a certified occupational therapist assistant at the residence.

She and Weatherwood aide Pam Yothers help Laura Schwartz, the facility's physical therapist, to run the programs that begin with exercise to lively music.

At last week's session, they played a CD with range-of-motion movements narrated by the physical therapist's husband, Dr. Ben Schwartz. That was followed by arm-strenghtening actions with tension bands, then a break for snacks and mingling.

The sessions always end with recreation involving fine motor skills and cognitive exercises. For instance, participants toss a ball into a basket and "fish" with magnets at the end of a line. The fun and joking are part of the therapy.

"A lot of times people with Parkinson's have depression issues, so they need this socialization," Slivka said.

The National Parkinson Foundation estimates that 40 percent of patients are depressed, a condition that often precedes motor symptoms, and 30 percent develop dementia, a deterioration in intellect often resembling Alzheimer's disease.

No one knows what triggers Parkinson's disease.

"It's a neurological disease and the mechanism of how it happens is fairly clear to scientists," Talbert said. "But they don't know why it happens and they don't know how to cure it."

Fifteen percent of patients may have a family history. According to the foundation, the disease may be caused by "yet unknown environmental toxin acting on genetically susceptible individuals."

An article in The Torch, the newsletter of the Pittsburgh chapter, says that metals such as aluminum, copper, iron and manganese have been implicated, as well as certain pesticides including rotenone.

Researchers are puzzled by the high incidence of the disease in people who filmed a series in Canada with actor Michael J. Fox, who has Parkinson's.

"He was just starting his career in the 1970s and took part in a program and later found that four of about 50 people involved have Parkinson's, which is an extremely high ratio," Talbert said. "Four out of a relatively very small group is very high and beyond the realm of what would be possible. That's what makes it so baffling."

Fox is one of the widely recognized Parkinson's disease patients. Former Attorney General Janet Reno is another, and so are Pope John Paul and boxer Mohammed Ali. Patients number about 1.2 million in the United States and Canada.

Verna DiClaudio, of Jeannette, was diagnosed five years ago. She comes to the program with her husband, Joe, who said, "She moves better than she used to, and most of the time she's in a better mood."

Thomas Reid, a retired attorney from Ligonier, was diagnosed five years ago, too. He follows the exercise program at home and credits it with helping him to shed five pounds and tighten his belt one notch.

He likes the friendly concern of the staff, too. "We get to hug them when we leave," he joked.

Joe Bucciero of Delmont was attending the program in Monroeville. This was his first time at the Greensburg site, and some people recognized him as the strolling mandolinist who performs at numerous local events.

In 60 years, Bucciero, 82, has played at countless social events, more than 600 weddings and at the Westmoreland Arts and Heritage Festival for "18 or 19 years."

Still going strong, he recently played for a wine tasting fund-raiser for Westmoreland Human Opportunities, where he serves on the board of directors, and for a gig at Station Square in Pittsburgh's South Side.

"Don't give up," he advises other Parkinson's patients.

Stella Fedornak of Salem Township, the youngest participant at age 57, was always physically active and constantly walking.

"I noticed that I was falling and shaking," she said.

Four and four a half years ago, she found out why. Fedornak is an outspoken champion of the wellness group and of Parkinson's disease awareness. She wrote a letter asking Michael J. Fox to come to their meetings, and is waiting for a reply.

Chapter founder and president Jim Cordy, who has Parkinson's, testified before the U.S. Senate with Fox and was instrumental in the passing of the Udall Bill that dramatically increased research funding.

Cordy collaborates with many of the area's leaders in the field. That includes Michael Zigmond, a professor of neurology and psychiatry at the University of Pittsburgh, and associate director of research at the Pittsburgh Institute for Neurodegenerative Disease. Zigmond also serves on the Scientific Review Committee of the Micahel J. Fox Foundation and is on the steering committee of the chapter's exercise program.

Anthony Delitto is an associate professor at Pitt's department of physical therapy and is the director and chief investigator for the exercise program. He designed it with Kathleen G. Brandfass, director of outpatient neurological and geriatric services for the Centers for Rehab Services.

Researchers at the University of Pittsburgh also are being funded from the National Institutes of Health to study the possible curative power of exercise in mice with artificially induced Parkinson's disease.

"Pittsburgh is rapidly becoming a center for exercise research and treatment of Parkinson's disease," Talbert said.

Many patients in the wellness programs say that they're already feeling better.

"This is a wonderful program and it enhanced our ability to serve the community," said Mary Ann Farr, a registered nurse who serves as Weatherwood's administrator. "We're getting very positive feedback from the individuals and their families. It's made a huge difference to them."

Additional Information:

Resources

  • The Parkinson Wellness Program meets from 1:30 to 4 p.m. every Monday and Friday at Weatherwood Assisted Living Residence, 896 Weatherwood Lane, off Mt. Pleasant Road. For more information, call 724-853-2084.

  • A Parkinson's support group meets the second Tuesday of the month, alternating between The Aerobic Center at noon and Westmoreland Regional Hospital at 4 p.m. For information, call Becki Demi at 724-834-5268.

  • The Parkinson Chapter of Greater Pittsburgh is located at 6507 Wilkins Ave., Pittsburgh. For more information, call 412-365-2086.

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