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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