I'd be interested in how you have been able to track how fast or slow your PALS is progressing, especially since you imply that he was progressing very quickly until he changed his diet and took supplements and is now slowed "tremendously." Every single case of ALS is different and the mystery of how to even determine how quickly one is progressing has not been solved ... let alone how to alter the progression., except by Rilutek and maintaining one's weight. So I'd very much like to hear how you determined at first that he had fast progression (was that the neuro's evaluation or your own estimate?) and is now progressing very slowly. If your method of evaluating progression is sound, that alone is a major medical breakthrough!
I'm really sorry about your brother, and I hope for his sake that it is slow progression. I, personally, have no bias against alternative medicine, and would try anything that had just a glimmer of possibility. I would LOVE IT if you would tell us exactly what your brother's fast progression consisted of, at what point he changed his diet, and how quickly the slow progression kicked in. I think FVC is probably the best measure of ALS decline. What was your brother's "score" when he was diagnosed and what is it now?
Blessings to you for caring for your brother.
Well we have a very scientific way of tracking him......I get on the phone and ask him "How Ya doin".....
No actually, I don't think it's a "major medical breakthrough" to slow down the progression of ALS, and you must forgive me, I don't have his FVC numbers (He's still breathing fine though.....again calculated with our highly sophisticated testing method)
If by diagnosed you mean when the doctor said hey....your symptoms are bad enough now so we can call it ALS, well that was approximately 3 yrs, but as many of you know, symptoms for many start before then.
Hope this doesn't sound flippant, I know you'd like some scientific evidence that will prove what I've stated. I'm sorry I don't have any, only anecdotal evidence. His progression from simple back pain to difficulty walking was alarming, since he started his various treatments and supplements, which BTW was a regime created by an ND not by any book, he is still on his feet and mobile, and unfortunately for other family members he's still a smart ass....
I reiterate "Alternative" and "Mainstream" treatments are the path for my brother and we have seen results, but I don't advocate one way or another for anyone, I simply wanted others to know about our journey. If it provides comfort or hope all the better.
By the way, I wrote in the forum out of curiosity, because I like so many here despise charlatan's, but when I saw the videos of the Edney's I didn't come away with that impression of them. I was pleased to see his progress from 2003 to 2008, and I just didn't get the impression that it was a scam. I could absolutely be wrong about them, but would advice those here to see the videos and judge for yourselves.