Rick Hermann wrote:
>
> Here are a few thoughts about breaking the news to one's child.
>
> Yesterday I gave my twelve year old son the news that I had Parkinson's
> disease. I had been thinking for a while about what to say, whether to say
> anything to him directly, as he has asked me in recent weeks about my
> shaking hand. So yesterday, I told him when I got home from work that I had
> learned about the wonderful PD Bike-a-thon that Donna Kos is coordinating
> and thought we (my son Eli and I) could participate on at least a leg of
> the coast-to-coast ride. He's been bugging me about a bike trip--wants to
> peddle from Seattle to Florida!! "How'd you find out about this?" he asked.
> "On the Internet," I said. A couple more questions led to a couple more
> honest answers and finally he asked why I was so interested in this
> disease. "I have it," I said. "That's why my hand shakes." He thought for a
> moment. "I don't feel very safe in this family," Eli finally said. "Mom's
> got arthritis, grandpa died of a stroke, mom's mom is in a nursing hom, and
> you've got Parkinson's disease." I assured him that Parkinson's is not
> hereditary, that arthritis doesn't run in either my or my wife Lee's
> families, that his grandma is very old and has lived a pretty good life.I
> talked about my mom's parents, who lived into their nineties, and the good
> health of my 80-year-old dad (except for emphysema caused by years of
> smoking--an avoidable disease, I pointed  out to my son). He seemed
> thoughtful. "Will your whole body start to shake?" he asked. Tough
> questions! I told him I was taking good medications that really help me
> keep symptoms minimized and that I'd be okay for a really long time. "But
> does it get worse as time goes on?" he persisted. "Yes," I said. "But it's
> going to happen very slowly." We talked a little bit more, until he seemed
> okay for the time being, and later I asked Lee if she thought I had done
> okay. "I thought so," she said, "but he's really worried about disease." He
> is. But the truth is, Eli has two really good parents who will continue to
> take care of  him and nurture his budding independence as he moves into his
> teen-age years--and believe me those challenges have already begun. I feel
> like we'll be okay in the larger picture, and we try to pass that outlook
> on without minimizing his fears. It'll come up again, I'm sure.
>
> If anyone has feedback, suggestions, cautions, etc. in working with
> children in this situation, I'd be glad to hear from you. This isn't in any
> of the parenting books that I've read!
>
> Rick 47, 8 months
Dear Rick,
I think you approached the subject very well.  It will probably take
your son some more time to adjust to your PD. I know, when I got sick my
son was only 4 and my daughter was only 7.  Now they are 17 and 20
respectivley.  At first they were angry, not at me but at the PD.  After
a while they accepted my PD.  Now I couldn't ask for two children more
supportive and understanding.  Give your son some room to accept your PD
and I am sure that your boy will turn out to be one of your greatest
assets.

Marv Weiss 49(13)