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Hi Raj, J., Ervin, and all: I really don't know more than anyone else about all this miracle cure stuff, and of course anyone can and should seek the care they find useful and healing. However, I take exception to the idea that "the whole field of treating PD is up in the air," as though decades of research, improved medications, neuroprotective products, and tons of Parkinsons-specific research drawing from the basic research being done in cellular biology to find a cure for neurological diseases adds up to not much. We are so lucky to have recourse to the available tools. We have hope for a cure in our lifetimes. Everyone who reads a newspaper knows the progress being made in this direction. J., I respectfully ask whether "rage" against the disease really such a helpful approach? If Kubler-Ross is right about the stages leading from diagnosis to peaceful acceptance, anger is step number 2 or 3, which I guess means rage is natural but needs to be moved through. I am under no illusion that I am being "cured" by anything I do or ingest to ease the difficulties of living with Parkinson's. So far, there is no cure. Fact. Take it or leave it. I wish the Paneri adherents well, even though I don't think he's on to anything (at best) and may be less than truthful in his promotion of the supposed Parkinson's cure. Finally, I don't think we're fighting here. It's a lively discussion and one that interests a few of us. That's why I subscribe to this list. Rick On Sunday, December 29, 2002, at 05:40 PM, Automatic digest processor wrote: > Date: Sun, 29 Dec 2002 14:02:02 -0400 > From: Brightline <[log in to unmask]> > Subject: Re: Dr. Paneri > > 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 > [log in to unmask] > ************* > > > ----- 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. >> > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: > mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > > ------------------------------ > > Date: Sun, 29 Dec 2002 15:28:41 -0500 > From: "J. Warner Mills" <[log in to unmask]> > Subject: Re: Dr. Paneri > > Well said, Raj: > After all why sit on one's hands doing nothing, waiting for what may > not come > for a long time? Nothing ventured, nothing gained. That's why I keep > on > evaluating logical and promising alternatives. I've lived long enough > to know > there's more than one way in almost every human affliction. After all > they say > this is a designer disease. Maybe, just maybe, there are options out > there that > might apply to my situation. My feelings, like yours, are, if I can > add or > regain even a few days of improved functioning to my already numbered > days, I'm > going to go for it. 10 years from now I would have missed an enormous > amount of > living. I'm going to continue to rage against the dimunition of my > bodily > functioning. Money is going to do me no good when I'm twisted, in pain > and > hallucinating. I sure can't take it with me at the close of the day. > If I lose > a few dollars trying, it's only money, at least I would have tried. > > jwm > Brightline wrote: > >> 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. > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: > mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > > ------------------------------ > > Date: Sun, 29 Dec 2002 15:14:03 -0800 > From: Ervin McCarthy <[log in to unmask]> > Subject: Re: Dr. Paneri > > Warner , and other supporters of our search for an alternative. Should > this > attempt be fruitful I will be the first to notify the list. It may not > be > my last try for an alternative but I will always be on the search. God > bless the list. > Ervin McCarthy ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn