Dear Susan
>
>I have never heard of Parkinson's Plus. SNIPPED
You are not alone in that! There are about 8 different variations of PD+,
each with particular symptoms that identify it to a really knowledgeable
neuro, and usually there is no med that works for long. One way they are
diagnosed is that Sinemet does NOT relieve them.
>SNIPPED..Mom never recovered and in 92 was diagnosed. She
>was put on sinemet and that made her way worse ( hiking her shoulder &
>twisting her ankle ). Over the years she has tried many drugs and 99% did
>not work. In 96 she began to freeze 50 times a day and her neurologist gave
>her Artane and it was like a magic wand was waved ( as mom described it )
>she walked faster, no more freezing, it was like having my old mom back!!!
>It worked until a 5 maybe 6 weeks ago. Mom was taking a tiny piece of
>sinemet when she felt she needed it, but when she did she would suffer for
>three days with hiking her shoulder, etc...She has tried requip, permax,
>several others with no success, they would just make her very ill.
Of course if she is sensitive to Sinemet she would have reactions to the
agonists (Requip, etc) also.
>
>My mom can be seen by a Movement Disorder Specialist but only when she is
>stable and gets out of the hospital. SNIPPED
That's good news--I hope she can be stabilized quickly--the sudden
deterioration is certainly troubling.
It is especially hard for you, with your own medical problem and being in a
wheelchair, to deal with all this. You are being a fine advocate for her,
but need all the help you can get bucking the system!
SNIPPED
>>.I talked to our Doctor about taking mom to the movement disorder clinic
>>but I feel that mom has gon down so much and is too frail and she feels
>>that in the end that it wouldn't hold much hope and also mom has not had
>>very little success with many of the parkinson's drugs. Even Requip
>>didn't help.
SNIPPED
>>. I think she will have to go into a nursing home and in the past we had
>>discussed
>this and she in no uncertain terms to me that she did not ever want to go
>in one. With me being in a wheelchair and being not very strong physically
>there is no way I can look after her.
>> >
It is sad that folks make their relatives and CGs "promise" never to "put
me in a NH", as sometimes that is the only way they can get the degree of
care they need, and not all NHs are "snake pits". I hope if this does seem
the only alternative, you can find a good one, and not feel guilty about
it. But even a single consultation at a MDClinic might clarify what is
really going on with her. I know you are doing your best, and getting lots
of advice. Take care of you, too.
Camilla Flintermann, CG for Peter 80/9+
Oxford, Ohio
http://www.newcountry.nu/pd/members/camilla/one.htm
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