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Younger Parkinson's Patients Get Website and New Book
May 09, 2009
SMYRNA, GA -- Parkinson's disease affects an estimated four million people worldwide, with as many as one million in the US alone. But it's estimated that fewer than twenty percent of people with Parkinson's are diagnosed before the age of fifty, and even fewer before the age of forty.
Now, new efforts are being made to reach out to these young-onset patients and the young children they often care for.
The American Parkinson's Disease Association recently launched the website www.youngparkinsons.org, which caters to young-onset patients as well as their family members, friends and healthcare providers.
Author and Parkinson's patient Kay Mixson Jenkins has also worked to help early-onset Parkinson's disease patients and their children with her new book, Who Is Pee Dee? Explaining Parkinson's to a Child.
Ms. Jenkins' book is the story of a boy named Colt and his toy panda bear, Pee Dee. Colt's mother has Parkinson's disease and he doesn't understand why she has the symptoms she does. The book is a deeply personal endeavor for Ms. Jenkins.
"I was diagnosed with Parkinson's disease when I was thirty-four, so I know what it's like to be a young person and be told that you have this disease," says Ms. Jenkins, "Parkinson's carries with it a great deal of predictability. I know what will happen to my body as I degenerate, but I can't stop it."
In Who Is Pee Dee?, Ms. Jenkins addresses some of the more startling aspects of young-onset Parkinson's, including:
• By the time symptoms develop, eighty percent of the chemicals that control movement are gone.
• Many children will grow up having never seen their parents without Parkinson's.
• The medications that Parkinson's patients use to treat the disease can have side effects that make parenting even more difficult.
• Parents with Parkinson's often have to plan their schedules around the medications they take.
Ms. Jenkins has been active in raising awareness about the disease and is the founder of Parkinson's in the Park, a charity organization that raises money for research. She is also active in lobbying her state representatives to provide for funding for cutting-edge research techniques.
"I think this is a great resource for people who want support and tips on how to handle this disease and the effects it might have on others," says Ms. Jenkins of the APDA website. "I hope that Who Is Pee Dee? will do the same."
Kay Mixson Jenkins is the Georgia state co-coordinator for the Parkinson's Action Network, leads the Effingham County Parkinson's support group and was selected as a Parkinson's patient advocate for UCB, Inc.
For more information, contact the author directly via kmj@ParkinsonsInThePark.org.
(Who Is Pee Dee? Explaining Parkinson's Disease to a Child by Kay Mixson Jenkins; illustrated by Richard Morgan; ISBN: 978-0-9819129-0-5; $12.95; 33 pages; 8" x 8"; hardcover; UCB, Inc.)
Keywords: Parkinson's disease, children's book and Parkinson's Family » Parenting
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