Eileen:
PD is often called a 'designer disease'. This is a misnomer. We don't
have any say on how to design our own PD. It is already designed and
delivered to you; it is your job to find out what you got. In simple terms,
something that works for me may not necessarily work for others. In some
people some symptoms are more prounced than in others. Also, the sypmtoms
show signs of progression at varying rates for different individuals.
Fortunately for me, I have, I think, a slow poke type. But, as would be
expected, when one gets older the symptoms might get severe rather rapidly
than when one is younger. Yes! My legs are behaving just like yours!
You are right. There are probably some people who do not have any
serious problems with the current medications such as sinemet. But, sooner
or later this affects all of us, producing side effects of its own
(dyskensia), which may often get worse than the cure in later stages.
The best approach is you should do your own thorough research on what
ever you are taking. Fortunately for us, internet is very handy for this
purpose. Make full use of it. But, also do not trust blindly what ever you
read. This is where a forum like this is extremely useful. Throw your
ideas and questions out and read the responses. And then again use your
judgment before you spend any money on anything. A good example is my
experience with oral gluathione (GSH). Eg. I find oral glutathione (GSH) is
very effective for me. But, some people strongly believe that GSH is not
absorbed before being broken down into smaller amino acids, (in spite of the
fact that there is published evidence to the contrary). That is why it is
supposed to be given IV. I am sure IV GSH may help the blood concentration
reach a high level. But, considering the prohibitive cost, it made sense to
me to take it orally and am happy with it, so far. If this fails, one can
also try transdermal GSH, which is commercially availabe now. I have not
tried this yet.
Co Q10 is molecule with about 76 amino acids. When it is effective
orally, why not a tripeptide like GSH be absorbed?
In addition to what I take as mentioned previously, I try to take at
least two courses of fresh spinach every day (protects nerve cells) and a
handfull of blue berries every day. Both are extremely protective and good
nutritions for nerve cells. Straw berries aso fall in this category. If
you have a freezer, you should freeze enough blueberries and strawberries to
last till the next season.
Good luck!
Raj
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************************
----- Original Message -----
From: "Eileen Werndorfer" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, September 14, 2002 1:10 PM
Subject: Re: Care Plan at Nursing Home for Severe PD client/patient/exercise
> Raj
> I am 53.
>
> I can't believe that you have had it for at least 30 years and are still
not
> on medication. I like hearing things like that since the medication
scares
> me because I hear such awful things about side effects. I'm sure there
are
> people out their on the medication who are doing fine without the side
> effects, but unfortunately you never hear about them, you only hear the
bad
> things.
>
> I also take Co Q10, and Coral Calcium which my husband heard is good so
I'm
> trying it, thats about it except for my regular vitamins. Maybe I will
have
> to start trying some of the stuff that you are taking, what does it do for
> you. Do your legs shake alot, mine do. But mainly when I am sitting,
like
> right now as I am typing this they are going a mile a minute. My hand
tremor
> I can stop by grabbing it with my other hand, but the leg I have not
control
> over unless I stand up. Crazy huh?
>
> Well I am hanging in here without medication for as long as possible thats
> all I know.
>
> Eileen
>
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