Dear PWP's
I have had PD since long before my children were born. I was diagnosed
while pregnant with Jane Amy (my second- born). So my children have
grown up accepting (or not accepting, as the case may be) but knowing,
as they know how to breathe, that Mummy has Parkinson's. Jane Amy is
now 15. I enclose an article she was asked to write for a support group
in Chicago, after the co-ordinator had read the information about the
teen group Jane Amy was trying to get going here in Northern Virginia,
and also the original info that was handed out, on a card with a PURPLE
ribbon - which some of you got when you came to the PAN Forum.
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My Mother Couldn't Braid My Hair
I grew up with Parkinson's Disease. My mother has had Parkinson's
since before I was born. My earliest memory of her disease is that she
could never braid my hair. How I wanted her to be able! But she never
could, so I learned to do it for myself.
Over the years, I have learned to do more and more things by myself as
my mother's condition worsened. I've learned how to do laundry, shop
for groceries, and cook dinner. Nobody's stir-fry is better than mine!
I have learned to rely on other people for the things my mother can't
offer. Over the summer, I have to learn to drive so that when my
brother goes to college I can drive my mom places and pick up groceries.
Sometimes, it's hard, having a mother with Parkinson's. I hate it when
she can't do the simplest things herself. But I love my mother, and I
can still lead a wonderful life even if my hair isn't braided.
Jane-Amy Blue, 15 years old
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Teen P.E.P.
(Parkinson's Educators Project)
Teen P.E.P. is a brand new groups within the National Parkinson's
Foundation (NPF)-CCNPF. Teen P.E.P. is designed for teens to become
involved educating others about PD and to become active in community
service with the CCNPF. We are looking for teens who want to get
involved with Parkinson's Disease (speaking with middle and high school
classes, educating elementary school children, community service,
working with the CCNPF, etc).
For more information on becoming involved, call Jane-Amy Blue at
(703)642-9244 or Chava Sladek in the Information and Referral Center at
(703)876-0836, and inquire about Teen P.E.P.
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The point I think I am trying to make is that we have never treated my
PD as something special. It is just there. Like their older brother.
We never used words like stepmother (such bad connotations in children"s
literature). They just grew up knowing that Jason has a different
mother, who lives far away. They've met her, and like her.
I'm not so sure they like my PD, though.
P.S. I have it on good authority that Purple is still available for use
by Parkinson's - it is the pastel shades of lavender and lilac etc that
have been adopted by the gay movement.
Hilary Blue
