At 07:49 AM 1/16/97 -0500, you wrote:
>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]
>          XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX
>
>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
Hi
You know Bernie that there is a book written by a Dr. Dwight McGoon,
surgeon, himself a Pd sufferer.  Title of his book is THE PARKINSON HANDBOOK
- printed in the US by Norton Publisher.
Fell