Debilitating tremors are quite often the first thing that comes to mind when people think of Parkinson's disease. But the disease can affect balance, speech, energy level, short-term memory and nutrition as well.
It is a chronic, progressive central nervous system disorder that afflicts an estimated 1 million Americans, perhaps half of whom are undiagnosed, according to the actor Michael J. Fox's Foundation for Parkinson's Research Web site.
"Most people don't accept the diagnosis because, like Alzheimer's, you will keep going downhill," said local Realtor/broker Jim Young. He was diagnosed in 1998, but it took three doctors to convince him.
Young started the monthly support group in Payson.
"Everyone at the meetings has different problems, different symptoms and different treatment results," said caregiver Dolores Greensfelder.
George, her husband of 41 years, was diagnosed 10 years ago. Up until two years ago his medications were working fine. Now, he has short-term memory loss due to progression of the disease.
Cutting back on one medication affected his movements, which the couple found more frustrating than the memory loss.
"There is definitely a trade-off," Delores said.
Now they don't travel as much, George can't do jigsaw puzzles as fast as he used to, but "George can walk the legs off anyone," she said.
Pat Thrasher finds it helpful to talk to others at the meetings. The biggest changes she has noticed in the two years since her diagnosis are coordination, slowness moving and balance.
"I was falling down quite a bit before the medication," Thrasher said.
"The fundamental problem in Parkinson's is the lack of dopamine, a neural chemical that is used in the brain to make things work right," said doctor Alan Michels. He practices internal medicine and pediatrics in Payson for Banner Heath System.
Sinemet, the brand name for the drug levedopa, is converted by the brain into dopamine, but as the disease worsens, larger and larger doses must be taken. With the increased mobility Sinemet offers, come side effects -- hallucinations and muscle tics. Carpidopa, the other active ingredient in Sinemet helps to reduce these side effects.
There is no cure for Parkinson's but speech pathologists, physical and occupational therapists and physicians can help.
The disease can result in some patients becoming stooped over. This means the lungs and diaphragm are compressed and the patient is speaking "down."
The loudness of the voice is automatically increased by sitting or standing with a straighter posture so the patient has enough air for complete sentences.
Range of motion exercises are a way to maintain or increase mobility. A physical therapist can tailor exercises to the individual's abilities and limitations.
The Parkinson's Disease Foundation has exercise flip charts and videos available.
An occupational therapist can evaluate a patient's home and activities to allow that person to continue to bathe, dress and feed him or herself. The therapist may suggest alternatives like Velcro shoes rather than shoes with laces, or a bed with lifts.
There are also surgical options.
"My patients are my best teachers," said Dr. Padma Mahant. She is board certified in neurology with specialized training in Parkinson's and movement disorders. She is one of the Valley specialists with whom Michels consults.
Mahant encouraged the support group members to talk to each other about what was working, communicate with their doctors and seek a second opinion if they wished.
"I am happy to facilitate a second opinion," said Michels. "I want to know that the person was truly an expert that helped the patient arrive at a decision and then I want to know that it truly worked because I gain a lot from that."
Michels' Parkinson's patients are able to consult with Mahant and the other specialists at Banner Good Samaritan Medical Center's Movement Disorder Clinic in Phoenix through the process of telemedicine.
There are many subtleties to diagnosing Parkinson's. Working with the experts has trained Michels to be a smarter practitioner, giving patients the care that they need.
Presently, Michels is holding two telemedicine sessions per month in cooperation with Payson Regional Medical Center.
Telemedicine saves patients the exhaustion of a long car ride and, often, the expense of an overnight trip.
Dr. Michels' office is located in the Samaritan Health Center, 708 Coeur d'Alene in Payson.
Relatively few support groups exist in the Valley and the doctors and therapists who attended the Payson support group's February meeting agreed with Young's logic in starting the group. Information is power and nothing can take the place of getting together with other people who deal with Parkinson's disease on a daily basis.
The Parkinson's support group meets from 10:30 a.m. to 1:30 p.m. on the last Tuesday of the month at the church on the northeast corner of Colcord and Bonita. For more information, call Jim Young at (928) 474-5574.