By Ben Byer

When I was told that I had ALS almost four years ago, my first thought was, “What can I do about it?” My doctor, who explained that there was currently no way to stop the relentless progression of the disease, quickly dispelled that notion. I was dumbfounded. I thought surely there must be something somewhere to fix this problem. I have come to understand that this was part of my denial. But denial is a powerful drug, and it led me to try a wide array of treatments. Some of them may have been beneficial; some may have sped up the disease process. It is impossible to say. Here is the complete list of every method I have tried to stop the loss of nerves and muscles in my body. None of them have been successful.

1) Rilutek- The only FDA approved drug for ALS, proven to increase life span by two to three months. Cost is $800 a month. (This is useless as far as I can tell.)

2) Antioxidants – Lou Gehrig tried this approach. It didn’t work for him either.

* Vitamin E (The liquid form tastes like castor oil)
* Vitamin C (When I was a kid, I loved lemons)
* Vitamin A (I have no idea what this does)
* Vitamin B2 (riboflavin, same as above)
* Vitamin B3 (niacin, same as above)
* CoEnzyme Q10 (I took 14 of these one day)
* Idebenone (I don’t know what this is)
* Selenium (Like the metal, I think. Is that a metal?)
* Tocotrienols (I like this word)
* Alpha Lipoic Acid (Reminds me of battery acid)
* Vitamin B12 (I’ve heard this is good for you)
* Biotin (No idea what this is)
* Pycnogogenol (Pick-nah-je-nahl)
* Tumeric (Isn’t this a spice in Indian food?)
* Omega 3 from Fish Oil (I bet this is good for you)
* Flax seed oil (Reminds me of a burlap sack)
* Multi-supplement Anti-Oxidant (Kind of boring)
* Ester E (Again, no idea)
* PABA (N.I.)
* Coral Calcium (I never really took this)
* Acetyl-L-Carnitine (Hmmm)
* Zinc (Mmmm)

3) The prescription drugs I took that probably damaged my liver:

* Celebrex (My friend’s mother gave me a one year supply of this)
* Minocycline (This is really for acne, but someone thought it would help with ALS)

4) To increase muscle mass, I tried some body-builder methods:

* Protein powder (I like vanilla)
* Creatine (This dehydrated me)
* Two-cal Weight Gain formula (Comes in a blue and white can)
* Beta-hydroxy beta-methylbutyrate (HMB, or Tastes Like Shit)
* Bally’s gym 3 times a week with a personal trainer (I hate that place)

5) Still progressing, I went to the Far East:

* BuNaoGao, Chinese herbal medicine (This is good shit)
* Tai Chi (I met a Tai Chi master named “Young Master”)
* Tibetan medicine (I never tried this, but did buy a one year supply for $7)
* Buddhism (I really thought this would help)
* Acupuncture (I don’t like getting stuck with needles)
* Massage (The best hour of my week)
* A fetal cell transplant into my brain and spine (I caught this all on film)
* Chinese food (It is actually considered medicine in China)

6) Still progressing:

* Actos (A drug for diabetes that I took for a month)
* Yoga (Both of my instructors are hot)
* Spending time with my son
* Making a great film (This is fun)
* Good food and wine (These taste good)
* Medicinal Marijuana (This tastes really good)
* Accepting my life (The End)

June 15th, 2006