Education improves Parkinson’s patients’ lives

Exercise, good nutrition, socialization all play role

Two years ago, a group of Parkinson’s patients and their spouses went on a 17-day cruise through the Panama Canal sponsored by City of Hope National Medical Center in Duarte, CA. When the patients boarded the ship in Fort Lauderdale, FL, they were bent over and shuffling. By the end of the trip, the patients were walking straight, and their caregiver spouses looked 20 years younger.

Education provided by hospital staff who accompanied the patients on the cruise had caused the dramatic change, says Mary Willis, coordinator for the Parkinson’s program at City of Hope National Medical Center. Staff included a nurse, the medical director of the Parkinson’s center, an exercise therapist, and speech therapist.

During the voyage, Willis and two assistants organized social activities for the patients so their spouses could do other activities such as shore excursions. The caregivers learned the importance of making time for themselves in their daily routine. (For more information on caregiver support, see story, p. 22.)

The success of the cruise was the catalyst behind other planned trips.

"It is a wonderful way for people with handicaps to travel. They don’t have to continually pack and unpack or meet tour buses," says Willis.

Willis works with a travel agent and directly with the cruise line to get the best rates. For every 16 passengers that booked, one staff member was given a complimentary voyage by the cruise line. Subsidies from pharmaceutical companies covered the cost of the cruise for the rest of the staff. Patients and caregivers paid between $2,500 and $4,000 for the cruise depending on what cabin they selected.

Although not all patients and caregivers can afford a cruise, it is just one method Willis uses to teach patients with Parkinson’s disease how to improve the quality of their lives. Her educational efforts are one reason the Miami-based National Parkinson’s Foundation named the program at City of Hope a Parkinson’s Center of Excellence.

Parkinson’s disease is a progressive neurological disorder that results from degeneration of neutrons in a region of the brain that controls movement. Symptoms include tremors; slow movement or an inability to move, rigid limbs, a shuffling gait, and a stooped posture. There are about 50,000 new cases of Parkinson’s disease reported annually. These figures are expected to increase as the average age of the population increases, according to the National Institute of Health in Bethesda, MD.

The disease was first described in 1817 by a London physician named James Parkinson. In the 1800s, patients were placed in long-term care facilities by their families who did not understand the disease. Today it is the patients who frequently shut themselves off from social activities and become reclusive, says Willis.

For that reason, the City of Hope program that Willis coordinates focuses on quality-of-life issues. The education takes place through support groups in various communities in the Los Angeles region, which patients and caregivers attend. Meetings are held in convenient locations such as hospitals, senior centers, and churches.

Education improves quality of life

Education is particularly important for Parkinson’s patients because they must understand their bodies, says Willis. Stress, diet, and lack of sleep all cause chemistry changes in the body that affect the dopamine level of the brain, she says. An hour and fifteen minutes are allotted at each support group meeting for teaching.

Meetings focus on information that impacts lifestyle. One teaching session covered how a pill enters the blood stream and the importance of drinking water. "Parkinson’s is a disease of movement, but most people don’t realize that it affects everything that moves in the body. Parkinson’s patients blink and swallow less," says Willis. Therefore, when they take a pill, they wash it down with two swallows of water, and it takes longer to work.

Another meeting focused on diet. Certain foods, such as animal protein and dairy products, can inhibit the effectiveness of medications in some Parkinson’s patients. Patients must learn to experiment to see what works for them and what doesn’t, says Willis.

"Many factors affect Parkinson’s disease including exercise, attitude, and medications. My philosophy is that patients should go to a support group and learn everything they can, and then go home and apply it," she says.

Each support group meeting begins with a half hour of chair and stretching exercises led by a fitness expert from the YMCA. "At each meeting, we try to stress the importance of exercise," says Willis.

The exercise session is followed by refreshments and a time for members to socialize before the education portion of the meeting. Since many Parkinson’s patients withdraw, the social aspect of the meetings have proven very beneficial. Friendships have formed, and large groups of Parkinson’s patients meet for a round of golf, a card game, or a lunch outing.