Re: Newly dx'd PD

["Cassidy, Carole" <CCASSIDY@xxxxxxxxxxxxxxxxxxxxxxx>]

We do something like this at the Parkinson's Institute, too.  In addition to
receiving support group information, a newly diagnosed patient is contacted
by our Outeach Department after the initial visit and is also invited to a
seminar we hold twice a year specifically for newly diagnosed patients.  Our
volunteer auxiliary members also answer questions here in the building--many
of them are patients or caregivers.

-----Original Message-----
From: judith richards [mailto:judithr@xxxxxxxx]
Sent: Friday, October 30, 1998 3:01 PM
To: Multiple recipients of list PARKINSN
Subject: Re: Newly dx'd PD


Barbara Mallut wrote:
> I'd like to see all newly diagnosed PWPs be contacted by another
> Parkie who will act as a contact person ...a tactful one... with
> answers to the myriads of questions the newby Parkie may have, and
> suggestions and hints on how best to adapt to the disease and to ease
> newly diagnosed into a support group sooner, rather than later.

        When a newly diagnosed young onset contacts the Parkinson office
here,
they are invited to join our support group. If they are interested, they
are told that they will be called by one of the leaders. Then, either
Joe (co-leader) or I (whichever) call the new person and invite them to
meet us at our home.
        This past summer we had two new couples here with the four of us -
Joe
and his wife, Donna, and Al and myself. We have found that small
meetings like this make new PWP more comfortable prior to meeting the
whole group.
        Sometimes they are not ready to join the group, but prefer to meet
and
talk to someone one on one. In that case, Joe or I will be contacted to
set up a meeting. Joe has even met new PWP in a coffee shop - sort of
neutral territory.
        There are contact people available to talk to older newly diagnosed
PWP
and/or their spouses, too.

> I suspect my experience was an extreme because of that one man, but
> it haunted me the whole time that I spent working up to going to the
> group again.

I had a similar experience which is one of the reasons I like to invite
newbies here.

Judith
--
Judith Richards, London, Ontario, Canada
<judithr@xxxxxxxx>
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