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Living with Parkinson's disease

Local group helps women with Parkinson's live life fully

Susan Speicher has Parkinson's disease, a progressive neurological disorder that, as of now, has no cure, but please don't call her "the woman with Parkinson's."

"Parkinson's isn't who I am, it's just something I have," she says. "I have gray hair, and a small dog, and Parkinson's."

Ms. Speicher, a widow who moved to Atherton from Woodside about 12 years ago, is part of a group called Parkinson's Women Support that meets monthly in Palo Alto. The group says its goal is to provide encouragement, camaraderie and compassion, with a focus on living life fully despite -- or with -- Parkinson's.

The group started in 2008 and has about 70 members, about 25 of whom meet for a monthly luncheon.

"Parkinson's is something you live with. We're a group of women who want you to live the best you can with it. And to laugh and be supported. To be encouraged, exercise and to know that you're not alone," Ms. Speicher says.

"We're not a formal organization. We're not dispensers of medical advice," she says. "We're someone who's been through it, who wants to let you know it will be all right."

At ParkinsonsWomen.com, the group has a blog and links to its Facebook page, both maintained by Darcy Blake, a Redwood City resident with Parkinson's who is the communications director for Menlo College in Atherton.

After Ms. Speicher was diagnosed at age 62, about seven years ago, she wasn't quite so accepting.

"I threw myself down on the floor," she says of the day she acknowledged the correctness of her longtime suspicion and her doctor's diagnosis that she had Parkinson's disease.

But then, she says, "I decided I better get off the floor."

Ms. Speicher says her first impulse was to find a cure for the disease. But with a background in education, not medicine, she soon had to acknowledge that wasn't likely.

"That's when I picked up the pace of my volunteer work," she says.

Part of that volunteer effort was to help organize an Oct. 29 seminar called "Women & PD: What's New?" in Redwood Shores. The group cut off registration at 60, but had to put out folding chairs when 70 women showed up, with one mother and daughter pair driving six hours to attend.

At the symposium, researchers from places including Stanford University, 23andMe, the Buck Institute and the University of California San Francisco talked about the latest research in Parkinson's disease and its effects on women.

Studies have shown that almost twice as many men as women have Parkinson's disease. "We don't know a lot about women and Parkinson's," Ms. Speicher says.

The Stanford School of Medicine's Movement Disorders Center says that Parkinson's disease affects more than 1.5 million people in the U.S. The disease, the center's website says, is the result of the loss of brain cells that produce the neurotransmitter dopamine.

The disease is usually diagnosed in those older than 50, but as many as 20 percent of those diagnosed are under 50.

Symptoms, according to the center's website, can include balance and posture problems, stiffness or rigidity of limbs or neck, tremors or trembling, general slowness of movement and difficulty with gait. Parkinson's patients also can be depressed or confused and have speech and writing difficulties.

"There's no cure; there's management," Ms. Speicher says.

"My Parkinson's is different from everybody else's Parkinson's," she says and what helps her may not help others.

But she has learned, she says, "with the right medicine, the right exercise and the right diet, it's something you can live with."

She quotes Michael J. Fox, perhaps the most well-known person with Parkinson's disease: "We're all going to get hit by the bus, but with Parkinson's, you can see it coming."

"I don't know how many stops that bus has before it gets to me," Ms. Speicher says. So she works at living her life to the fullest. Since March, she's been to Cuba, Argentina, Peru, Chile, Easter Island, Canada and England, plus twice to New York.

"I don't feel blessed to have Parkinson's," she says. "I also don't feel doomed by it."

What is the same for all with Parkinson's, she says, is this: "We all need to exercise and we all need to laugh and we all need to know there's somebody out there."

Resources for those with Parkinson's disease

The Midpeninsula has lots of resources for those with Parkinson's disease and their caregivers, ranging from exercise classes to clinical trials.

Parkinson's Women Support group

ParkinsonsWomen.com and facebook.com/ParkinsonsWomen has information about the group, which holds a lunch on the third Tuesday of the month, from noon to 1:30 p.m., usually at a Palo Alto restaurant. To join the lunch, RSVP at least 5 days in advance to: sfoster@learningdesignsinc.com.

American Parkinson Disease Association (APDA) Information & Referral Center at Stanford

Parkinsons.stanford.edu has listings of support groups (including those for caregivers as well as those with Parkinson's), and information on exercise classes, on the disease and on how to sign up for an email list or quarterly newsletter.

Stanford resources include a "Dance for Parkinson's" class based on a program designed by the Mark Morris Dance Group and the Brooklyn Parkinson Group for those with Parkinson's and their friends, family and caregivers. There are also Tai chi and qigong classes for those with Parkinson's.

The Parkinson's Institute and Clinical Center, Sunnyvale

Thepi.org has a list of resources, educational programs and events, plus a place to sign up for clinical trials.

National resources online

The Michael J. Fox Foundation for Parkinson's Research

Michaeljfox.org has information, such as "Parkinson's 101" and a tool to find clinical trials.

American Parkinson Disease Association

ADPAParkinson.org provides a way to order or download educational booklets and pamphlets and sign up for a quarterly newsletter and email list.

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