At 05:46 PM 11/11/96 -0500, you wrote:
>Hi
>
>I have subscribed to this list, as my mother was diagnosed with
>Parkinson's Disease 2 1/2 years ago. My family had noticed the symptoms a
>couple of years before, but due to denial on her part, it wasn't
>officially diagnosed earlier. She refused to tell anybody for about
>another year after that, although it was obvious something was wrong.
>Unfortunately I left the country (New Zealand) to live in the US just
>after her first symptoms appeared. When I came back to visit 18 months
>later, the disease had progressed a lot. It has now been 2 years since I
>have been back to visit, and my husband and I are going back for a few
>weeks in January/February 1997. There are now a lot of issues to deal
>with - mainly that she is very confused about everything now (I don't know
>if this is due to drug therapy or the disease itself). She also is having
>a lot of problems with her gait, and is falling a lot. Again denial is
>the main problem - we are trying to get my parents (my father is also very
>disabled post-stroke) to move to a retirement village, where there will be
>some degree of supervision, but my mother is "not ready", but thinks it is
>a good idea on some days.
>
>When I go back I would like to be of some help to the rest of my family,
>and I would also like to be prepared socially for what to expect, and how
>to deal with some of these issues. I am a Medical Librarian, so have all
>the disease facts, but none of the social aspects. How do we get around
>the "I am not an invalid" statements? We also have issues with her
>continuing to drive, forgetting to grocery shop etc. I do have a sister
>who lives close to them, and another several hours away, so I am not the
>only one dealing with this.
>
>I have never joined a listserv on a personal basis before, so this is a
>bit of an experiment.
>
>Looking forward to participating.
>
>************************
>Jane Thomsen
>Medical Librarian/CME Coordinator, Carson-Tahoe Hospital
>775 Fleischmann Way, PO Box 2168
>Carson City, Nevada 89702-2168
>Ph:(702)885-4358 Fax:(702)883-5063
>Email: [log in to unmask]
>************************
>
Dear Jane,
Not having seen your mother, I am flying blind. Here are a few ideas:
1. Parkinson's disease is not the kiss of death. It is a damn inconvenience and
in time becomes worse. Your mother is a new diagnose so she is probably not as
bad off as you may believe. Denial is unfortunate but a good sign. If she did
not do some denying she would likely be giving up which is worse.
Paarkinson's is to me the least worse of very bad diseases.
2. Reading about Parkinson's is horrendous. The worst cases are the ones you
read about in medical libraries. The medical schools do not usually teach the
students about the mild cases. The students are trained in hospitals. By the
time a PD patient needs to be hospitalized for PD, they are in bad shape and
in or near end stage.
3. Suggestion: See and talk with some PD patients who are still well enough not
to need hospitalization -- maybe someone who was diagnosed PD only 10 to 15
years
ago and still is mobile, still active, and is enjoying life. ... Enjoying life
but not so much as the case would be without the PD.
Visit a support group and see how the members are doing. I do not have an
address
in Carson City.. Las Vegas is in the same [but large] state. Try Jeri Giallanza
at 702-255-0510.. I got a nice snail-mail note from Jeri today.
WILL JOHNSTON 4049 OAKLAND SCHOOL ROAD
SALISBURY, MD 21804-2716
410-543-0110
Pres A.P.D.A. DelMarVa Chapter
