Learning to Live with Parkinson's Disease

When Jane Wolfe was first diagnosed with Parkinson's disease, she felt isolated.

"I didn't know anyone else with Parkinson's," the 67-year-old said. So, "I thought it would be great to have a support group," said Wolfe, who formerly worked as a professional advocate for people with disabilities in the state of Tennessee.
 
Parkinson's disease is a progressive brain disorder characterized by physical signs that sometimes mimic a stroke survivor.

Wolfe, who is being treated at Vanderbilt's Movement Disorder Clinic, lives in Jackson.

Last fall, Wolfe called the Jackson-Madison County General Hospital to inquire about getting a support group started.

She was directed to Anita Roark, the rehab marketing manager for the West Tennessee Rehab Center. Roark has helped to set up other support groups in the community.

They sent out a survey to people who have been identified as having some symptoms of Parkinson's disease. After receiving responses, they set up a time and place to meet.

The first meeting was held in a small room at Jackson-Madison County General Hospital. "Honestly, we thought we might get seven or eight people," Roark said of the attendees for the first meeting that was held in March.

But, Roark said she and Wolfe were pleasantly surprised when "we outgrew our meeting room the first night." There were 21 who showed up in all. They were not all people with Parkinson's disease. There were caregivers and family members and health professionals who also attended.

"It's a wonderful mix of people," Roark said, adding that the group is diverse in age. There are people from their 30s to their 70s. Eventually, there are plans to have a meeting for caregivers once or twice a year. "Caregivers face a lot of different issues than people who have the disease," Roark said.

People with Parkinson's disease can experience tremors in their hands, arms, legs, jaws and face. Sometimes, they will also have a slow shuffle in their gait.

Wolfe notes it is ironic that she was already familiar with resources for people with disabilities before she was diagnosed with Parkinson's.

For Wolfe, she said: "I started noticing a tremor first in my left arm. The only time it was still was when I was asleep."

First, tests were run to see if she had a mini-stroke.

"By the time you get the symptoms, it's pretty well established," Wolfe said of the disease. Wolfe, who tires easily, had to get an electric wheelchair.

The cause of Parkinson's disease is unknown, and there is currently no cure.

"While the condition usually develops after the age of 65, 15 percent of those diagnosed are under age 50," according to the National Parkinson Foundation.

"They don't know how a person gets Parkinson's," Wolfe said, adding that "it can be hereditary, drug induced or environmental."

Still, Wolfe is optimistic about the future of Parkinson's treatment.

"There's hope in new medication," she said, adding that the controversial debate for stem cell research will affect Parkinson's patients as well.

Stem cell therapy, which is not allowed in the United States right now, is said to help people with a wide range of incurable diseases, including spinal cord injuries and Parkinson's.

"The Parkinson's people will argue for the stem cell research," she said.

To help her with her stamina, Wolfe goes to aquatherapy three times a week.

Exercising in heated water is very therapeutic for her. She also is on medication for Parkinson's disease.

Wolfe has two adult children and an adult grandson. Her children, she said, are her caregivers. She also has three adoring pets: Mack, a Westie terrier, and two Siamese cats, Simon and Pooh.

Although Parkinson's disease is incurable, it's not fatal, the 67-year-old said. It takes some adjusting to, but Wolfe said it is possible to stay active. "I drive the car still, and I can go shopping."

FAQ: Parkinson's disease

Question: What is Parkinson's Disease?

Answer: Parkinson's Diseaseis a movement disorder that is chronic (persisting over a long period of time) and progressive (symptoms grow worse over time).

Q: Why does Parkinson's disease occur?

A: Parkinson's occurs when a group of brain cells that produce dopamine malfunction and eventually die. These cells are located in the part of the brain called the substantia nigra.

The neurotransmitter dopamine acts as a chemical messenger that carries signals to the parts of the brain that control movement initiation and coordination. When Parkinson's disease begins, these messenger cells die at a faster rate than normal, decreasing the amount of dopamine produced in the brain.

Q: What are the primary symptoms of Parkinson's Disease?

A: Tremor of the hands, arms, legs, jaw and face; rigidity or stiffness of the limbs and trunk; bradykinesia, or a slowing of voluntary movement; postural instability or impaired balance and coordination.

Approximately 15 percent are diagnosed prior to age 40, with the incidence increasing with age.

Q: What is the cause of Parkinson's Disease?

A: The cause is unknown.

Q: What is the cure for Parkinson's Disease?

A: There is no current cure. However, there are treatment options such as medication and surgery that can help to manage the symptoms.

Q: How many people have Parkinson's Disease?

A: Approximately 1 million Americans.

Q: What type of tremors occurs with Parkinson's Disease?

A: About 70 percent of people with Parkinson's disease experience "resting tremors." These tremors occur when the body is at rest, but often subside when the body goes into purposeful action.

These tremors generally appear in the hand or foot on one side of the body, or sometimes the jaw. In time the tremors spread to the other side of the body, but remain the most apparent in the side of origin. These tremors occur at a regular rate, about 4 to 6 beats per second.

Q: How fast does Parkinson's disease progress?

A: Although more rapid progression is sometimes seen, Parkinson's disease is generally a slow-moving disorder measured in decades rather than months or years.

- Source: Parkinson's Disease Foundation