Date:   Thu, 16 Jan 1997 07:23:13 -0500
From:   [log in to unmask]
Subject: Call for help/input to develope daily symptom checklist

Dear friends - Listmembers,

Your lists of symptoms and other information is requested to help Dr. Barber
create a daily symptoms check list. Bernie is a Geriatric Pchycologist that
is doing his best to help PWP. Let's help him back.

You all must know I'm terrible at driving a computer -  go the wrong way on a
one way road! May I please rely on you, listmmembers, to help me by helping
someone else? (Maybe if John or someone would check the archives - I've
flopped too often. Or personal experiences to share?)

Recent outreach efforts for the Udall Billl presented me the good luck of
 meeting another PARKINSN LIST member by telephone, Dr.Bernie Barber. Bernie
just started a new support group in Arizona and he needs help specific to the
care program he's working on for his group's members. He sought help from the
list but never got a response.I'm guessing that's because we're still
spinning from the great holiday season we all enjoyed.. I wonder if you can
use his request (copied below) and use my interpretation of his telephoned
explanation, to help him get the information he needs.  Is there info from
the archives someone might be able to seek and find for him? Or have you ever
developed anthing that might serve as a daily PD symptoms check list?
Following describes the need and Bernie's contact info..

Bernie Barber is trying to develope a check-off list, for nurses of an
assisted housing facility to use routinely when they check on their residents
that have PD, or better yet to promote the satisfaction of self control for
his patients, by providing them a simple recording tool of symptom or drug
side effect variances. The check-list It should be used as a consistant tool
used by the resident patients to stimulate more thorogh consistant
communication with their doctor. It should trigger recollection of what
occurred between doctor visits and stimulate conversation between patient and
doctor by frequency or intensity of concern. Sometimes there are things that
don't seem important enough to call the doctor, like tingling of the hands,
or dry eyes, or an itchy scalp,or the feeling of anxiety or the need to brace
yourself for long periods of time. For example; toes curling up or down with
cramping can actually make a diffferance with diagnostic evaluations. Our
symptoms are our mind's and body's means of communidcation what's happening
upstairs. We should help it to be heard. Nurses at home assisted facilities
are professionals, but that doesn't mean they are knowledgable with PD or
PDmedication symptoms Many PWP especially those who have progressed to where
they need assisted housing, live without partners to help monitor their
progress or to help by contribute during Neuo appointments.

There's a lot of needless discomfort (to say thee least) that doesn't have to
drag on if it can be recorded easily and quickly.  Your help is apppreciated!

Let's not discourage Bernie. The tool is a necessary one. Please contact him
with your input or questions. Thanks!

Maryhelen
[log in to unmask]

  (PLEASE SEND YOUR QUESTIONS/RESPONSES TO BERNIE)


                  [log in to unmask]
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Date:   97-01-02 17:56:09 EST
From:   [log in to unmask] (Bernard Barber, Ph.D.)

I am a geriatric psychologist working at an Assisted Living facility in Sun
City, Arizona.The nature of our population, senior citizens requiring
assistance with daily living activities includes about 5 people who are
PDers. Most support system programs required the members  to transport
themselves to the meetings.
Unfortunately our residents were unable to do that, so we started our own
program. We have affiliated ourselves with APDA and the University of
Arizona, APDA  Arizona Chapter. Our program consists of weekly meetings with
the facilities Activities Director, who assists the members with their
program, which includes exercises, talks by group invited professionals and
review of selected articles from PD foundations and information exchange
networks.

We have had additional education programs for staff, including our Certified
Nursing assistants. This leads me into the area that I need help. There is a
need for our staff to be able to document the status of our PD residents.
Sort a like the progress notes nurses keep on their patients in hospital or
skilled care centers.
The format should provide a check mark system that allows for easy marking
and easy visual review, something like the temperature and blood pressure
readings. I think it should also include information on
gait, degree of tremors, speech etc. It would seem to me that this kind of
reporting would make information transmittal to the resident's neurologist
more specific and easier for staff . The report system must be sensitive
enough to catch early warning signs rather than to respond after the
resident has demonstrate a more severe symptom. Often times, we are not
catching the subtlety of  medication changes, until sometimes it has
negatively affected the resident.

I can think of no better group of people to help us than members of this
list. I have been a member for over 4 months and have learned a lot from the
postings. Although I am in the senior years, I have not had daily experience
with PD until the last year and a half. I would appreciate any information
you all would like to submit to me, either through the list or my own email
address, [log in to unmask]

With much appreciation,

Bernie