Hi Sharon,
Last month I went to my first support group for PD. I am 52 years old,
and am doing great at this time. I run at least two miles aday and do yoga
two time a week. I found that when I went to the support group that the
people where older than me and not very active. There where two in
wheelchairs and one of them in real bad shape. I do not plan to go back to
the group for it is depressing to me. I know that sounds very hard and maybe
mean, I just feel where I am at in this fight I need all the positive that I
can get. I know where this PD will take me, but in order for me to fight it
the best I can I do not want to look it in the face. I know that there are
people on the list that are bad off and I love them dearly and learn a great
deal from them, for they have such a great spirit. I also get so much help
from this list that I feel that I do not need to go to a support group other
than this list. Besides I have to sit on folding chairs that make me stiff,
and the meeting is two hours long, that is to long for me. There was no
interaction when I was there just a speaker and then we where let lose.
Janice 52/50/46
----- Original Message -----
From: Sharon Norman <[log in to unmask]>
To: <[log in to unmask]>
Sent: Monday, November 15, 1999 6:49 PM
Subject: Info re Attendance Characteristics of PD Support Group Participants
and Needs Assessment Instruments
> Hi! As a "newbie" to the list, let me introduce myself. I'm a
> non-traditional (e.g., "older") Ph.D./Sociology student at the University
of
> Nevada - Las Vegas (had worked in aerospace for 9 years and got laid-off
so
> now I'm career-changing). My husband (Art) has PD (was diagnosed about 8
> years ago). We've both been active in the Las Vegas support groups as
well
> as those in the Orange County area (California).
>
> I've reached the point in my graduate program where I can start working on
> my dissertation, and I would like to have my research be useful to the PD
> community. Thus I am thinking of taking an applied approach looking at
some
> quality-of-life issues. Assuming that support groups are primarily
useful,
> one of the key questions I hope to address in my dissertation is why
people
> don't attend support groups on a regular basis. I'm sure there are many
> reasons and would like to learn what they are.
>
> I'm aware of the Global Parkinson's Disease Survey (GPDS) that was done
> fairly recently and am trying to get hard copies of the survey instruments
> used. Does anyone of this list know of any PD support groups that have
done
> any kind of needs assessment survey to their members on their mailing
lists?
> I am especially interested in getting either a point-of-contact and/or
leads
> for the actual survey instruments (so I don't have to reinvent "the
wheel")
> :)-
>
> Any help will be much appreciated. Thanks in advance.
>
> Sharon Norman
>
