Two caretakers shatter isolation, silence with Seattle foundation
Thursday, April 1, 1999
By CAROL SMITH P-I REPORTER
SEATTLE POST-INTELLIGENCER REPORTER
Parkinson's disease can be paralyzing, not just in its symptoms, but in its
effects on family members as well.
Bill Bell of Seattle remembers his feelings of immobilization and
helplessness when he learned that his mother had Parkinson's.
"The frightening aspect of finding out a loved one has Parkinson's is that
then you're on your own," he said. There's no one-stop resource center to
tell the patient and family what to expect, or how to cope.
See also: Parkinson's disease: The silent epidemic
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Bell, 38, has struggled alone to find answers for his mother over the past
12 years. And he's watched as the disease has touched more family and
friends. Since his mother's diagnosis, his stepfather, his godfather and his
uncle's brother have all been diagnosed with Parkinson's.
Then he ran into Craig Howard, a former business colleague. Howard, 37, had
a similar tale. His stepmother has had Parkinson's for 15 years. He, too,
had found coping with Parkinson's an isolating, frustrating experience.
Together, Bell and Howard founded the Northwest Parkinson's Foundation to
help make it easier for patients and families to get better answers about
the disease. The foundation's goal is to establish a comprehensive
Parkinson's institute in Seattle.
The year-old foundation is now a full-time commitment for both. They are on
the verge of signing a partnership agreement with a local hospital to
provide space and support for the institute, which they expect to open by
mid-summer. The center, which will have a budget of about $1 million a year
from private donations and insurance coverage, will provide full-spectrum
care for patients and support services for families. The foundation will
pick up some of the services not covered by patients' insurance. The
foundation also plans to promote research.
"There hasn't been a focused center for care and knowledge of Parkinson's in
the Northwest," Howard said.
The new center is modeled on the Struthers Center in Minnesota, and will
provide a holistic approach to managing Parkinson's. In addition to medical
treatment, it will provide exercise programs, nutritional counseling and
music and art therapy, as well as occupational, speech and physical therapy.
It also will provide classes, support groups and respite care for
caregivers.
Managing Parkinson's disease is as much an art as a science, Bell said.
Patients often can improve the quality of their lives substantially by
changing or adjusting their medications.
But such fine-tuning takes a tremendous amount of communication among
patients, caregivers and doctors, especially as new treatments become
available at an increasing rate.
That kind of information-sharing is a primary goal of the Parkinson's
Foundation, Bell said.
Parkinson's tends to isolate patients, Bell said. "A lot of people retire to
their chairs," he said. "They have no outlet for their frustration. People
excuse themselves from public lives. Depression is common."
The foundation's other goal is to raise public awareness. Parkinson's is a
forgotten disease, Bell said. "We've never had a Jerry Lewis."
Bill Bell
Executive Director
Northwest Parkinson's Foundation
425-746-5556 / [log in to unmask]
http://www.nwpf.org
