Dear Linda--I'm glad you have found the PIEN list, where your feelings can
be understood. Of course your hisband is sad, because he loves you, and
grieves for all the losses you both experience. If he uses the computer,
would he like to join our sublist, CARE, just for the caregivers? There is
also a list for the children, PDKids--here's the info on it:
*******
PDKIDS
The American Parkinson Disease Association Young Parkinson's Information &
Referral Center (http://members.aol.com/apdaypd) has created
PDKIDS, an email discussion list for children who are living in a family
affected by
Parkinson's Disease
Parkinson's disease is a family affair. Even young children are affected
when someone they love is not functioning in their "normal" ways. PDKIDS is a
forum for children (through teenage years) who live with or love someone with
Parkinson's disease. Through this Internet program, PDKIDS offers children a
place to get to know others like themselves who are in similar circumstances
and have similar concerns. By joining PDKIDS, children can "talk" to each
other in confidence (to the extent that an Internet list will allow) and
discuss anything they wish about how PD affects them.
This is a free program for any child 18 years or younger.
How it works:
· To join, kids simply send an email to
[log in to unmask]
· You will then receive a welcome message with instructions about how to use
PDKIDS.
· When you post an email message to PDKIDS, your personal email addresses
will be
automatically deleted from email headers posted to the list to ensure
confidentiality.
· When you reply to an email, your response will go directly to the PDKIDS
list, not to an individual member.
· There will be a "light adult presence" on the list, serving to provide
technical guidance and to ensure that the conversation remains constructive.
This "presence" will be provided by Susan Reese, MA, RN, LCSW, Coordinator
of
the APDA Young Parkinson's Information & Referral Center and by Simon Coles,
co-owner of the list,and himself an adult PD kid.
Please note: Membership in PDKIDS is for children only. Adults wishing to
discuss Parkinson's Disease in general may join one of the lists at
http://www.coles.org.uk/community.htm
Or call the APDA Young-Onset Center at 1/800-223-9776
To reach the list owners, send an email to
[log in to unmask]
*******
Also:
http://james.parkinsons.org.uk/pdkids.htm
*********
If he wants to join CARE, please have him email me, or check out the
CAREWebsite.
. And you--stay connected! {{{{{{{{{{{{Linda}}}}}}}}}}
>Hi! I'am Linda. i understand where your are coming from. I, myself feel the
>same way. I try so hard to put a good front. I cannot drive anymore,think
>like I used too, even taking a shower has been trouble for me. My husband had
>to get a grip bar and seat for me to take a bath. We were talking the other
>day and he broke down and cried. I was scared that he would leave me cause of
>pd. He said no that he would take care of me no matter what. That is alot for
>me cause as I am writing you I am also crying. My children are taking it
>pretty hard. But for now I will keep putting up this front Your letter was
>the first one that I can relate too. Let's keep writing. Linda
Camilla Flintermann, CG for Peter 82/70/55
Oxford, Ohio
<[log in to unmask]>
on PDWebring at
http://members.tripod.lycos.nl/genugten/flinterm.htm
"Ask me about the CARE list for
Caregivers of Parkinsonians ! "
And visit the CARE webring at
http://www.crosswinds.net/~caregivers/index.html
