Dear All:
I have to take my hats off to David Moreland for his open minded
attitude. In my understanding, that is all Dr. Paneri wants from us.
Otherwise, Dr. Paneri would not have offered to treat Tom Bernadine with out
charge. However, Tom did not want to take that route and that is his
prerogative. Just ask yourself. Would you offer to treat somebody without
charge if you did not believe in your own medication? It costs Rs. 500
(roughly about US$ 11) for him to mail the stuff from India to North
America. I am sure that Dr. Paneri is aware that if Tom did not find it
helpful, he is not going to go anywhere with this.
A few of us are trying it out and I think it is our prerogative. As I
told you before, I thought it was worth giving a shot. I did not say I
believe in it hundred percent. And even if it gives some temporary
symptomatic relief our money would not have been wasted. If it does not do
any good, we shall wash our hands and let you all know it does not work.
That is all there is to it. Nobody has to "eat crow" no matter what
happens. If it reall works wonders, as claimed by his patients, what do we
have to complain about? Please hold on to your horses. Let us wait and
see.
What we do not realize is that the whole field of treating PD is still
up in the air. Even diagnosis of PD is onlt 75% accurate since it is mainly
done by physical examination by the experts. I read a review of the
diagnostic features of PD after somebody interviewed 300 Movement Disorder
Specialists and each one had different criteria for the conclusions they
have reached! In my own cae, so far I have seen 6 MDSs and every one of
them gave me different verdicts! Some say it is ET and not PD, while others
say it is both PD and ET! One said that I may have some symptoms of PD
but I wasn't ready for any treament yet! How do you explain then the
presence of postural instability, drooling, cramps in my calf muscles,
difficulty in getting out of my car etc? (Did you know that nobody knows if
when people with ET symptoms develop PD symptoms, is it one or two different
diseases? Unlike ET, PD was not thought to be an inherited disease, which
mayh not be necessarily true; there are more genetic defects in PD patients
than in ET patients. In fact, both may be equally familial and a certain %
of them may not be familial.)
It appears that everything goes in this field. Think of so many drugs
for PD and nothing is working for everybody. This is because I am told PD
is a 'designer disease". The same thing appears to be true for DBS, the
most advanced treatment for PD. Even after DBS, people are still taking
Sinemet and some others are still experiencing diskenesia. Is there any
course of action one can take, where one is sure of alleviating all the
symptoms, leave alone cure?
Somebody told that we are desparate to take this direction. Is there
any one of us not desparate about what is waiting in store for us?
I am in full agreement with you when you say that we should all act-up
now and get politically involved in supporting the cause of stem cell
studies. But, if you are waiting for the stem cell cure to come along and
save all of us from misery, think again. First you have to change the
minds of the politicians or change the government. Then the stem cell
research have to be funded and then they have to find the cure after a lot
of trials. This would take a minimum of 10 years if not more. Personally I
feel this would be too late for most of us. That is another reason, why we
should hurry up and change the minds of the ignorant or irrational
politicians. The only way is educating them as well as the general public
and also letting the know of our sufferings and how we are wasting our life
because of this ailment.
This is no time to fight amongst ourselves and blame each other for any
reason at all. I request that people be open minded, be constructive (even
if you do not agree), and not be abusive. I do not think this is the
purpose of this forum.
Thank you for your time.
Raj
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*************
----- Original Message -----
From: "David Moreland" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, December 29, 2002 10:41 AM
Subject: Re: Dr. Paneri
> Rick,
> I guess we can agree to disagree. I don't know if dr Paneri's brew of
herbs
> and spices will effectively treat PD but it seems like we could be
> supportive of Raj, Evan and Nilo as they have opted to try it. And it
> appears to be the only game in town. I am sure that they will give us
> progress reports as time goes on and we will learn how effective it is.
>
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