My response to the FDA's Prescription Drug User Fee Act Patient-Focused Drug Development Meeting

In looking at this further, if you Google search on "ALS herbs" and "Gehrig Herbs", there are some links you may find interesting. An expert on herbs is Dr. Andrew Weil in Arizona Center for Integrative Medicine; he might have some suggestions to pursue in concert with your doctors. There are several herbs suggested to resist neural degeneration. Hard to know what to believe as some of the recommendations are on sites that sell herbs.

Search also on "gehrig fruit", to find a webpage about an Annals of Neurology study by Alberto Ascherio at Harvard, for an article with the text "Bright colored fruits and vegetables may hold the power to prevent or delay Lou Gehrig’s disease, also known as amyotrophic lateral sclerosis (ALS), a group of U.S. researchers found.". And you can ask yourself, from the name of a related book, "What Color is Your Diet"? Which may be hard, because if anyone has a "right" to unhealthy comfort food, it would seem to be you and your family.

One thing that surprised me also were discussions about mercury fillings (and other dental infection issues) and neural degeneration. Could there be some common toxin like that or something else related to ALS? Search on "Mercury ALS" for those discussions. Could people with ALS be sensitive, say, to some pesticides used in farming? Some pesticides work by destroying the nervous system of insects. Search on "ALS pesticides" for related discussions. Note that even if you have mercury fillings and eat foods with pesticides, it is possible that overall superior nutrition may better help your body to deal with related challenges even if you don't do anything about the challenges themselves. For example, the body does have biochemical pathways that excrete mercury, so the question might be, why are those pathways not working correctly in some people with ALS?

Still, I don't want to provide false hope, and likely all of these won't do much beyond perhaps slow the degeneration (if they work at all). Just making sure you have considered these options, even if they may not apply for you. There are multiple ways to approach diseases by trying to understand root causes, and mainstream medicine often ignores some of these basics, since there is no profit in telling people basic advice compared to selling drugs and procedures. As Dr. Joel Fuhrman says, we all have weak links (and strong ones) from genetics; whether those links get pulled on tends to be a function of diet and lifestyle.

Following those sorts of links has led me to the story of someone who kept ALS at bay for ten years (although eventually succumbing to it). Here is a sample page from his blog on mercury and ALS:
http://fromnightmarestomiracles.blogspot.com/2010/10/mercury-heavy-metal...

About Joe Wions from his blog: "In 2003, I was forced into early retirement by ALS (aka Lou Gehrig’s Disease), from a successful career as a management consultant. Facing the nightmare that my life was about to end prematurely, I began to contemplate the horrors of a difficult demise, abandoning my family, financial ruin, and other emotionally crushing issues. It took about a month to shake off the depression, and get busy. Since traditional medicine offers no cure or effective treatment, and the expectation of certain death, I began exploring alternative medicine and healing practices. Along the way, I have experienced miracles of friendship, community, personal insight, courage, strength, and healing. As a result, I am now a member of an elite group – the less than 10% of PALS (persons with ALS) who have survived 10 years or more. I intend to keep exploring and learning until I heal completely, or until medical science finds a cure. I am currently seeking help to publish a book about my experiences. By sharing my story, I hope to inspire and motivate others with difficult challenges to find creative, productive and satisfying ways to persevere."

Even as he has passed on, maybe the information he left behind there may be of use to you?

A decade is a long time these days in medical research. Not saying that would work for you though. Just stuff to explore, the same way Joe Wions did.

It's ironic to think off all the knowledge about what works and what doesn't work to treat or prevent disease may be locked up in NSA computers if they indeed record all our conversations and emails with our doctors and relatives about medical issues (as well as anything else) -- but ironically that knowledge is not accessible for improving medical care because such organizations focus all that trillions of dollars of technology and innovation on preventing having historically thousands of US Americans killed by terrorism instead of preventing annually over a million US Americans killed by disease.

Anyway, I guess it may be hard to improve over Google these days for background medical research, if you kind of know what to look for in the first place from years of trial and error. And it is also hard to sift through the junk and scams from the gems -- very hard (why I think sensemaking tools could help with that). There is a funny Dilbert cartoon about "The Google Health Plan" somewhere. That is indeed where a caring competent medical professional may come in handy -- if your doctors listen and are always self-educating.

So, it looks like it is possible to at least manage the ALS disease for a decade, in some cases, with some combination of nutrition (including colorful organic fruits), herbs, perhaps removing toxins like mercury or pesticides, and similar approaches. Although, which is the right approach may be hard to figure out. Hopefully you have good doctors to help with that. MDs like Terry Wahls, Joel Fuhrman, Andrew Weil, or similar doctors may be able to help you in doing that.