June 2006
THE LIST
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 ****)
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 ****)
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)
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