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Welcome to our new list members,
David, i've been trying to write a helpful response to your letter. I was
about your wife's age when diagnosed, and although we didn't have young
children, we had two teenagers to deal with (another story!!). I also
freaked out when i heard the doctor say - "I think you have Parkinson's
Disease" and also worried about being able to be a good parent.
 I think Gail's reply says just about everything i would say. Thanks Gail
- It's reassuring to me also, diagnosed 6 years ago, to hear from someone
like you who has been livinig with PD for 13 years.

I'll just add that the most important words for me to hear from my
husband after my diagnosis was that our life and future might be
different from what we had planned, but that we would still have a future
together. I  also had to come to understand for myself that i was still
the same person despite having Parkinson's, and that i could go on with a
meaningful life. That realization did not come overnight - it was a long
process. You have to be patient.

Being on the Parkinsn list helped me get through the early diagnosis days
and still makes a tremendous difference in coping day to day. I hope your
wife reads the messages- even if she doesn't post anything
yet. And she should feel free to contact people off-list if she would
like to write to people individually, who are going through or were going
through similar experiences.
It took a number of years until i could feel comfortable attending a
support group meeting in person - I was afraid to see people at more
advanced stages - but when i finally did - it helped me a lot (thanks to
the great people in the Parkinson's Wellness Group of Western New York).

As Gail wrote, kids do adjust and often learn to be stronger and more
caring people by growing up with a parent with Parkinson's. The  APDA
Young Onset Information and Referral Center recently published a book for
children about PD - My Mommy has PD by Jan Quist- you can order it by
calling the center at 800-223-9776 .

Being proactive and getting involved in Parkinson's advocacy has also
been a great help in coping with the disease. You'll see messages about
upcoming issues on the list. Also see the PAN website -
www.parkinsonsaction.org  and the GrassRootsConnection -
www.grassrootsconnection.com  to find out what we can all do to help end
PD.

Best wishes,
Linda Herman

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