Date: Wed, 7 Feb 1996 19:42:09 -0500
From: judith guttman <[log in to unmask]>
Subject: Re: Michel Margosis and Neurologists
I take the position that we are always responsible for our care. I have seen
too many mistakes to feel safe otherwise. I saw my daughter almost die because
a doctor who prescribed an anticonvulsant for her also prescribed an
antibiotic that should never be taken with it. I saw my partner get more and
more confused because she was taken combinations of drugs -- all prescribed by
the same doctor -- that should never be combined. Now I have several reference
books on drugs. I always look up new prescriptions before I fill them, and I
always call if I have questions. At least twice the prescription has been
changed because of my question.
I have found it very difficult to get good information about Parkinsons. This
list has been the most helpful resource I know. I may not agree with
everything I read, but it gives me ideas about things to explore and things to
check with the doctor.
It is very difficult to find doctors who take PD seriously -- especially for
people over 65. We have just joined a different health care system and I hope
things will be better for us. But I support the person who feels that the
doctor is not the last word. They are too busy, they see too many people per
hour. They may know more than we do about the disease and the medications,
perhaps, but we know more than they do about the person and the particular
combinations of diseases and medications for that person, and we have the time
and the motivation to cross check information and ask questions that they
don't seem to ask.
Judith
<---- Begin Included Message ---->
Date: Wed, 7 Feb 1996 16:54:43 -0500
From: Robert Naylor <[log in to unmask]>
Subject: Michel Margosis and Neurologists
To: "Parkinson's Disease - Information Exchange Network"
<[log in to unmask]>
Michel Margosis writes
I should not meddle in this, but I worry about people who get into a tizzy
and gad about to find out what to do about PD. If you get an answer from
each of us on the list, you would need to statiscally determine the best
approach for your case. Looking around just the small number of people in
our support group, I can see the wide divergence and degree in the disease
and the variety of therapy available. I am absolutely convinced that the
treatment for my wife is strictly up to the neurologist. The information we
get from this listing is good, but it helps me only in finding out about new
therapies, pharmaceutical and/or medical, that we can discuss, and
occasionally bring about THROUGH our neurologist. Good
luck...............................Michel Margosis
My reply is
I wonder how you will feel when your wife reaches the advanced
Parkinson's stage and your neurologist can't do any more for her.
I am fortunate to have a neurologist who realizes that the caregiver and
the neurologist must work together as a team.
This Parkinson's support group it doing a wonderful job and everyone
concerned, especially Barb P. should be congratulated for making a
worthwhile contribution to Parkinson's.
From Robert Naylor spouse and caregiver of Olive Naylor Age 73 Parkinsons
19 years.
E-Mail ([log in to unmask])
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Judith
Judith A Guttman
122 G Street SW "...we are wound
Washington DC 20024 with mercy round and round
[log in to unmask] as if with air" -- Hopkins
