Learning to live with Parkinsons

April is Parkinson’s Awareness month

By: Leon Tovey
   MONROE — April is Parkinson’s Awareness month, but for Chuck and Helen Anness of Rossmoor, it’s just another page on the calendar.
   Ms. Anness was diagnosed about 10 years ago with Parkinson’s disease, a chronic and progressive neurological disorder that impairs motor skills and speech.
   Like many of the estimated 1.5 million Americans who have the disease, Ms. Anness’ hands have a slight tremor and her mobility is limitet. Until about two years ago, she was mobile enough that she and her husband were still able to winter in Florida.
   "It’s always been very manageable," Ms. Anness said April 5. "I have more problems now though."
   But the Annesses said they do have a place to turn for help. As the disease has progressed and Mr. Anness’ task of caring for his wife has gotten more difficult, the two have become more and more involved in the Township Office on Aging’s Parkinson’s Support Group.
   "We were very happy to find this group," Ms. Anness said. "It’s great to have the exchange of ideas, because the doctors can’t look at every aspect and tell you how to deal with it."
   The group, which meets on the first Wednesday of each month at the Township Senior Center, was formed two years ago.
   The Annesses have been coming right from the start. Each month, more than a dozen residents who are affected by Parkinson’s meet to discuss issues ranging from new medications and treatments to how to maintain a social life.
   "It really is a very savvy group of people when it comes to things like treatments and the literature," said Janice Dibling, manager of speech pathology at JFK Johnson Rehabilitation Institute in Edison, who recently took over as facilitator of the group.
   That savviness was on display at last week’s meeting, when the topic of nutrition came up. As she often does, Ms. Dibling had invited a specialist from JFK to the meeting to discuss the topic of the day.
   As dietician Diane Weeks talked about ways to tailor the standard balanced diet to the needs of Parkinson’s patients, members of the group were ready with questions ranging from the effects of caffeine on those with the disease (a Harvard School of Public Health study published in 2001 found that moderate caffeine consumption reduces the risk of the disease) to what’s missing from the standard food pyramid.
   "Where’s doughnuts on here?" Concordia resident Howard Goodman asked with a sly grin.
   "There at the top there, with the foods it says you should only eat about five servings of per week," Ms. Weeks responded with a laugh.
   After Ms. Weeks’ presentation — which included a lengthy discussion on the problem of protein consumption (protein can interfere with the body’s absorption of levodopa, a common Parkinson’s medication) — talk turned to area neurologists and how to choose one.
   Group member Marilou, whose husband John suffers from Parkinson’s, said she was not happy with the doctor the couple has been seeing.
   "I’m just very curious to look at new treatments and I’m not happy that (the doctor) doesn’t seem to be," she said.
   "Well, what do we know about Parkinson’s patients?" Ms. Dibling asked in response. "They’re all different, right? No two treatments are exactly the same, so you just have to work out what works for you."
   Mr. Anness agreed, adding that that was what the support group is about. He said he and his wife had difficulty with her last physician, who they had to drive 45 minutes to see.
   "He said ‘use your judgment,’" Mr. Anness recalled. "Well in the past two years, I’ve run out of judgment. But that’s where this group helps out."
   The Senior Center will offer a presentation, "Understanding Parkinson’s Disease," with Annette Nieves, assistant professor of neurology at UMDNJ, at 1:30 p.m. April 26. More information on the event and the Parkinson’s Support Group can be obtained by calling the township Office on Aging at (732) 521-6111.