When Mike Shanahan was diagnosed with the early stages of Parkinson’s disease in 1993, he didn’t say anything about it to most of his co-workers in the UW Police Department that he had led as chief for more than 20 years.
He went on to work for another two years as chief before retiring in 1995. But as a 1996 New Year’s resolution, he wrote a heartfelt letter to dozens of friends, family and colleagues, telling them of his battle with Parkinson’s, vowing to keep being just as active in the community as he always was.
“I am the luckiest guy I know,” he wrote.
He kept his word.
Shanahan is the driving force behind a patient education project for people with Parkinson’s, their physicians, families and friends. The result is a 90-minute DVD titled Managing Parkinson’s: Straight Talk and Honest Hope, now being distributed nationwide by the Washington State Chapter of the American Parkinson Disease Association (APDA).
“Our goal is to place this DVD into the hands of everyone who can benefit from it. The title comes from our belief that receiving a diagnosis of Parkinson’s doesn’t mean that your life is over,” Shanahan said. “There are things that you can do, and need to do, to live with Parkinson’s. With growing numbers of early-onset Parkinson’s cases, like Michael J. Fox’s, the need for honest, hopeful dialogue is becoming critical.”
With unwavering help from the Washington State Chapter of the APDA, Shanahan received funding for the project, including the pro bono production services of Vance Martin Creative. Prominent Parkinson’s experts from around the world were recruited to take part in the DVD, including Dr. Phillip Swanson, Dr. James Leverenz and Dr. Ali Samii of the UW Department of Neurology.
“The value of this tool is in the message it provides: that the world is not over once a person is diagnosed with Parkinson’s disease,” Samii said. “Although there is no cure for it, there are lots of ways to treat its symptoms. Among neurodegenerative disorders, I think Parkinson’s is the most treatable and manageable.”
The DVD begins with a foreword by Dr. C. Everett Koop, former surgeon general of the United States.
“It’s a tribute to Mike, and how much his friends and former colleagues care about him, that this was able to be produced,” said Anne Guthrie, program coordinator for the APDA Information and Referral Center, which is located in the Department of Neurology.
The Information and Referral Center is an arm of the national APDA. There are 60 such centers nationwide, according to Guthrie, who accepts inquiries about Parkinson’s from Washington, Oregon, Alaska and Hawaii, referring them to resources in their area.
“This DVD is giving hope to a lot of people,” she said. Over half the initial 25,000 copies have now been distributed to individuals, support groups, and physicians nationwide. “The DVD replaces a whole lot of books I used to send out.”
The DVD can be particularly helpful to those newly diagnosed with Parkinson’s. An estimated 50,000 new cases are diagnosed each year.
“These days people jump on to the Internet to learn about Parkinson’s, but the problem is overload,” said Guthrie, who has coordinated the center at the UW for four years. “So when people start looking for information, it can be overwhelming and very discouraging. Mike’s diagnosis was relatively quick, but many people go through years of being treated for things that it really isn’t.”
The DVD, Shanahan said, tries to give people a resource as they battle this disease.
“We wanted it to be personal for them, like you were sitting in the room with them,” he said. “We try to give people a snapshot of what they are going to need, and most of all, a sense of hope.”
The DVD is available for no charge from the Washington State Chapter of APDA as long as the supply lasts via www.waparkinsons.org. Further information about the DVD and the work of APDA in Washington state can also be found on the Web site. The Information and Referral Center is open three days a week and can be reached at 206-543-5369 or email@example.com.