Re: Similar Neurodegenerative Disorders - Ron Ritch

May 17, 2002

I'm glad you joined us here Ron. Several of us have subscribed to mailing

lists for the other related neurodegerative disorders to try to share the

same information which is relevant to all. I couldn't agree more that these

disorders would get more recognition if we stood together under one

umbrella... we need to agree on a name to call ourselves first though I

think.

The Muscular Dystrophy Association includes about 40 disorders under their

umbrella and they seem to be doing quite well with name recognition. Many

of the disorders they cover are not even that closely related to one

another.

The term " proteinopathies " came up recently in literature from the European

MSA Study Group. I read on the European PSP website where the term

" neurosy " was suggested. Perhaps we need to start a letter writing campaign

to the major researchers of these disorders and tell them we want them to

come up with a term that the public can easily recognize.

Take care,

Pam

Re: Digest Number 1486

> This is my first message to the group. My wife passed away in December

from

> PSP after a long period ending in a nursing home. My research suggested

> quite early that trying to increase the amount of glutathione the liver

> produced would be one of the paths we should proceed in trying to slow the

> progression of the disease. I still think it is one of the best paths with

> PSP and it may be the same with MSA.

>

> This can be done best by adding N-Acetyl-cysteine or cysteine to the diet.

> These are amino acids used by the liver to create glutathione. NAC is also

a

> sustance that helps dry up the mucus in the throat. My website at

> http://pspinformation.com has some of the information I've uncovered.

> Especially interesting is a study from the University of Florida on the

use

> of NAC with neurogical diseases.

>

> I think glutamine, creatine and lecithin have uses too. NAC needs the B

> vitamins, vitamin C and selenium to be effective. Magnesium also may be

> useful.

>

> What someone who is taking NAC or cysteine doesn't need is tylenol.

Tylenol

> and NAC work against each other. Tylenol poisoning from an overdose stops

> the liver from creating glutathione and if an antidote isn't given soon

> enough the patient's liver fails and the patient dies.

>

> But is tylenol dangerous in small doses? I don't think anyone knows for

sure

> but since tylenol works against the production of glutathione and if not

> enough glutathione is being produced and there is an alternative to

tylenol

> that could be used in its place - why take the chance?

>

> With PSP the main thing we can do is to try to slow the progression of the

> disease. Most drugs normally used to treat Alzheimer's or Parkinson's

appear

> to do more harm than good. They all treat symptoms and none slow or cure

the

> disease. In many cases they introduce new symptoms or side-effects of

their

> own. In most cases the best course of treatment is loving care, good

> nutrition, the best quality of life possible. patience and a very watchful

> eye on the prescription and over-the-counter medications given.

>

> PSPInformation.com also covers other conditions besides PSP. I think good

> arguments could be made that diseases such as PSP, MSA, etc; are

variations

> of some greater disease that so far is unnamed. If a name was used to

cover

> the " family " of diseases instead of the present individual branches, we

> would be a much bigger group and be able to get more funding for research.

> But now we are splintered into small groups and really have little clout.

>

> You are welcome to visit our website and to contribute information. If you

> have any ideas how we can be of use to you please let me know.

>

> Ron Ritch

> Charlotte NC

May 17, 2002