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Seattle PI Special Parkinson’s Report

Tuesday April 03, 2001

Two caretakers shatter isolation, silence with Seattle foundation

April 1, 1999 - 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.

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."

P-I reporter Carol Smith can be reached at 206-448-8070 or via e-mail: <a href="mailto:carolsmith@seattle-pi.com">carolsmith@seattle-pi.com</a><P> <i>See the <a href="http://www.seattle-pi.com/local/park01.shtml">original special report</a> in the Seattle Post-Intelligencer

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