Kids Talk

Neurology Now
July/August 2008
Volume 4(4)
pp 5,9
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Of special interest to me was the article in March/April 2008 on sharing illness information with kids and family (“Kids Talk”).

I have had Parkinson's disease for 10 years now and can tell you that the diagnosis and first several months (to a year) with the disease were devastating for me. I only shared information with immediate family members and others on a “need-to-know” basis. I found that you, the patient, have to accept it all before being honest and open with others.

True story: one gal whom I'd been friends with for almost 30 years told me, upon hearing the news of my diagnosis, “I'm sorry you're so sick, but I have no time in my busy schedule for helping you or dealing with your health shortcomings.” So much for compassion!

One resource that helped me immensely is The Etiquette of Illness by Susan Halpern, which deals with several sides of this delicate issue: being sick and telling others, and accepting help and talking about it, including with children.

I had deep brain stimulation two years ago (thank God for intelligent and skilled physicians and new technology) and am doing well. I also attend Parkinson's support group meetings and have found an exercise group particularly for those so afflicted. Take it a day at time is my best advice!

—Phyllis Ross

St. Peters, MO

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