Something wonderful just happened. Sherry Macredes just made her first
post to the listserv and was answered within about an hour by four people
in about the same situation as hers. Sherry, you may not realize it, but
the people who answered you are not, shall I say, our list regulars. They
are people who have something in common with you and who can answer your
questions better than anyone - certainly better than me and better, you'll
learn, than a vast number of doctors - maybe even better than many
neurologists.
We welcome you to this listserv with open arms - should I say turned-on
computers? - and look forward to the day when you will also be able to give
guidance to newcomers.
It is difficult to add to the advice that you have been given, but permit
me to make three points:
1. Parkinson's is called a "Designer Disease": it is different for
everyone who has it. Its progress is different for everyone, as are its
symptoms, and its responses to medications.
2. You are entitled to a good doctor - and one to whom you call relate. It
has been suggested that you see a movement disorder specialist. That's
good advice. You should not hesitate to see your doctor when you feel you
need him/her, even though many doctors assign many tasks to their
Neurological Nurse. No matter how competent the neurological nurse (and
there are some really competent ones out there) there are some questions
that only a doctor should be answering for you.
3.You have available to you a great resource, the Internet in general and
this listserv in particular. Use it wisely. Progress may not seem to be
coming fast enough, but is coming. Hopefully we'll be taking giant steps
on the road to the cure soon.
Art
At 03:18 PM 9/17/99 , you wrote:
>I am a 47 year old female who has just been diagnosed with PD. So far I just
>can use my left hand very well and get shakes when I try. My left leg is also
>starting to get the jittery feeling. Also there is the problem with rigid
>muscles which is the worst! I guess I don't have much to complain about
>except lack of information. The doctors (and I have seen many) don't seem to
>want to give you any info. I am starting the drug Mirapex and am having some
>difficulty with nausea, but since the dose is still not enough I haven't
>gotten any relief from my symptoms. Do any of you know anything about this
>drug and what I can expect? I have read everything I can find on the web but
>that is just too depressing. The doctors say don't worry you should have
>many years of productive living...somehow I just think they must have told
>that to Muhammed Ali too and we all know that he isn't exactly productive.
>What can I really expect? How long will I be able to continue to work (I do
>accounting and use the keyboard alot which is getting very hard to do)?
>Should I be planning for assisted care soon? I know these questions are
>unanswerable but I wish someone could give me a ballpark figure...say 5-10
>years before you will require help with daily chores...or something! I sure
>all of you went through this period of confusion. During the day my husband
>and I discuss where we will put our backpacks on the next road trip, at night
>alone in my thoughts I wonder where we will put my wheelchair. My husband
>doesn't have a clue as to how bad this is, he just keeps saying when you are
>better and I don't want to tell him I never be any better. What do you say?
>Hey guy get real soon you will be changing my diapers! I would appreciate
>any answers to unanswerable questions, just so I can tell someone who is
>going through the same problems has already helped. Thanks
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Arthur Hirsch {} [log in to unmask] {} Lewisville, TX {} 972-434-2377
(nickname on instant mail, ICQ, and chat programs is cutterson)
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PAN Forum, other photos, and my approach to links:
http://www.fortunecity.com/meltingpot/farley/817/
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