Rick, I'm sorry about your brother and hope he is a slow progressor.
There are a couple of things that are proven to slow progression in most PALS: one is Rilutek and the other is keeping the patient from losing weight. There are also medications that can help with some of the more troublesome symptoms, such as cramps, spasms and emotional lability.
One of the things that turned me off from this book ... which describes an unproven method used by one person who probably never had ALS ... is that it recommends cutting out all meds, including Rilutek. To suggest on the basis of no evidence whatsoever that ALS patients stop taking a proven method of slowing ALS is to me almost criminal.
Unfortunately, a family member of mine jumped on this book as soon as I was diagnosed, and INSISTED that I try it. At a moment in time when I was trying to get my emotional bearings and learn as much as possible about ALS and its treatments, I had a real battle on my hands with the woman, whom I love very much. It was absolutely wearing me out trying to argue with her. A few simple searches on the Internet showed that this program was a bunch of bs. I could not stop her pressure and daily e-mails and phone calls insisting that I try this, and implying that anyone who doesn't follow this program is not "a fighter" and must really, really deep down inside want to die a long, lingering, painful death.
Finally, I told her, it's been proven that this is a bunch of bs, but if she insisted, I will order the book. She said, "It has to be true, because it would be just too cruel if it were a scam. How could anyone do that?"
Yeah, it would be cruel, wouldn't it, to scam people who have a progressive, fatal disease, just to make a buck by selling a few books?
Anyway, I at least ended the argument and never ordered the book. I'll stick to proven methods of coping with symptoms and slowing progression. Like everyone with ALS, I hope that a cure or at least other proven treatments are developed soon.
