Parkinson’s retreat offers information, coping advice
Tom Reid stopped smiling nine years ago. He is still happy to see his grandchildren. He still appreciates a Pittsburgh Steelers touchdown. He simply no longer can express emotion through facial movement.
Reid, 69, suffers from Parkinson’s disease.
When he received the diagnosis nine years ago, Reid was not surprised. Both his father and an uncle developed the disease when they were in their 80s. Although he didn’t want to admit it, he recognized some of the symptoms.
“I was sensitive to it,” said Reid, of Ligonier. “At the time, they were very subtle (signs). The main thing was, I had no facial expression. My wife said I had no face. My grandchildren would ask if I was sad.”
Since his diagnosis, Reid has become active in the Parkinson’s community, and he served on the planning committee for a recent weekend retreat at Antiochian Village, in Ligonier Township.
The theme, “Living Well with Parkinson Disease,” was designed to offer information from medical experts, such as Dr. Robert Moore, a professor of neurology and neuroscience at the University of Pittsburgh Medical Center.
Other speakers explained how Parkinson’s patients can find relief through a positive outlook, exercise, counseling and alternative therapies.
“It’s a tremendous idea, to provide an experience for people with Parkinson and their caregivers,” said Kevin Brown, executive director of the Parkinson Chapter of Greater Pittsburgh, which sponsored the retreat. “This is a way to discuss and talk about subjects that aren’t part of the regular Parkinson education.”
The retreat offered sessions in therapeutic drumming, exercise and tai chi, as well as seminars on potential treatments and how Parkinson’s affects one’s life.
Reid is just one of more than 10,000 Western Pennsylvania residents who suffer from Parkinson’s disease. Unfortunately, it seems as though that community is growing. More than 1.5 million Americans have the disease, with the highest incidence rates in the upper Midwest states such as Minnesota and Michigan.
Most people diagnosed are older than 65, but some people are diagnosed in their 30s or 40s.
No one knows what causes Parkinson’s. “This has been a really tough question, and it remains a tough question,” said Moore, a neurologist and research scientist.
James Parkinson first recognized the disease in 1817. Since then, physicians and scientists have been able to uncover how it progresses.
They know that nerve cells in the part of the brain called the substantia nigra produce a substance called dopamine. This neurotransmitter allows cells to send impulses between nerve endings that permit muscles to operate smoothly.
In Parkinson’s disease, the dopamine-producing cells degenerate rapidly. Without dopamine, nerve endings receive confusing messages, which cause muscles to jerk, tremble or become rigid.
“These dopamine neurons begin to die of old age when you reach 20,” Moore said. “You lose 5 percent a decade. It takes five to seven years of fast degeneration for symptoms (to appear). The brain can compensate for the loss of half of the dopamine cells.”
The disease develops long before any symptoms show.
Frank Catanzano, of Murrysville, was diagnosed with Parkinson’s on Jan. 12. He said the diagnosis put many events from the last few years into perspective.
“I lost my sense of smell six or seven years ago, before being diagnosed,” said Catanzano, 59. “The tremor started about a year ago.”
Most people recognize tremors as the primary symptom of Parkinson’s, thanks in part to the experiences of actors Michael J. Fox and Katharine Hepburn, who “went public” with their illness.
But not everyone will have that noticeable sign. Parkinson’s is hard to diagnose. No medical test reveals it. A diagnosis is made by a skilled doctor’s careful observations, and only after other medical conditions are ruled out.
“The first thing I watch is to see how often they blink,” Moore said. “People with Parkinson disease have a diminished blink rate. You can almost make a diagnosis on blink rate alone. People with Parkinson don’t move around while in a chair. They won’t cross their legs, for instance.”
Parkinson’s also leads to what doctors call “postural reflex impairment.”
“All of us live in an environment that is dominated by gravity,” Moore explained. “Gravity wants you to lie on the floor. With Parkinson disease, as the disease progresses, there is a loss of postural reflexes. People report being off balance. They report a bent posture.”
Some patients, like Reid, experience the “masked face” that inhibits facial expression. They may have slower movements, stiffness and rigidity. Parkinson’s also may affect a person’s voice or cause a patient to write in a small, cramped manner.
“It’s a very individualistic disease,” Reid said. “Each one of us is affected differently.”
In addition to motor impairment, patients may experience cognitive impairment, such as problems making or executing plans. Fifty percent of all patients suffer from depression at some point. And many patients are affected by sleep disorders, such as restless legs syndrome or nighttime sleep disruptions.
“There’s a lot of fear in being told you have an incurable disease,” Reid said. “I was fearful. Parkinson’s doesn’t kill you. It slows you down.”
To combat that fear, patients are encouraged to join support groups so they can learn the latest information and meet others who share their experience.
“It’s very helpful,” said Reid. “It’s scary when you see people in bad shape. You wonder, ‘Is that where I’m headed?’ But knowing that other people are similarly affected is comforting. The benefits far outweigh the downside.”
Medications can be used to ease symptoms, but nothing will banish Parkinson’s. Dopamine agonists mimic the brain chemical; neuroprotection agents shield the nerves. Surgery is a last resort that, in some cases, may help to alleviate severe symptoms.
For now, patients can only manage their symptoms as the disease progresses. Physicians often suggest occupational therapy, which can find trouble spots in the homes of people with balance problems or other motor deficiencies. They may recommend physical therapy for patients who have trouble walking, memory training for those with cognitive impairment, psychotherapy for those with depression.
“Exercise is as important as medication, and your outlook, and a sense of humor,” said Catanzano, owner of Emerald City Marketing and Communications. “I’ve exercised seven days a week since I’ve been 17. I’m hopeful. I’ll continue to exercise.”
A vegetarian and a long-distance runner, Catanzano has a slight reflex lag on his left side. His tremor has improved with medication, he said, but sometimes returns during a stressful meeting. Otherwise he has not noticed any severe physical limitations caused by Parkinson’s.
“The greatest fear is to have your quality of life diminish,” he said. “It’s not something you want.”
As yet, there’s no cure for Parkinson’s, but Moore is hopeful that soon will change.
“When I started out as a medical student there was a disease, childhood leukemia, that was very depressing,” he said. “Very few children ever survived. People came along with a chemotherapy that gave a remission for three to four months. Then there was another one and another one. The remissions were so long that the children were cured.
“I believe this will happen with Parkinson disease. I think we’ll end up with a cocktail of neuroprotection compounds that will do the same thing.”
The Parkinson Chapter of Greater Pittsburgh (www.ParkinsonPittsburgh.org) provides information and support groups for people with Parkinson’s disease. To contact David Von Hofen, director of programs and outreach, call 412-365-2086 or send e-mail to dvonhofen@ParkinsonPittsburgh.org.
A number of support groups meet regularly to address issues related to Parkinson’s.
• In Greensburg: 1:30 p.m. the second Tuesday of each month at Good Shepherd Lutheran Church. Contact: Becky Demi, 724-834-5268.
• In Indiana: 10 a.m. the second Saturday of the month at Calvary Presbyterian Church. Contact: Elsie McMillen, 724-465-2498; or Betty Stewart, 724-349-1842.
• In Somerset: 1 p.m. the second Thursday of the month at Somerset Hospital. Contact: Amy Pyle, 814-445-3330.
• In Washington: 1:30 p.m. the first Friday of the month at Washington Hospital. Contact: John Thomas, 724-745-1409.
• In the Mon Valley: A family and caregivers support group meets at Mon Valley Health Center; for times and dates, call Bill Garrow, 800-342-8980, Ext. 418.