Silly Things I Do

Ok, you've been diagnosed with ALS... what do you do now.

Rilutek, the brand name version of Riluzole.

Your doctor won't do much.  The only thing that treats ALS is Riluzole, and that hardly does anything to slow down the disease.  Pretty much the only thing the clinic can do is help alleviate symptoms once they get bad enough.  BiPAPs for forcing air into your lungs once your diaphragm starts to weaken, Nudexta for any Psudobulbar affect you might be experiencing, other things along those lines but nothing to treat or slow the disease down.  Some (most?) just do what the doctor tells them and wait for the disease to reach it's inevitable conclusion.  Doing nothing in the face of a terminal illness just didn't seem like a good plan so I started researching.

Now it might seem to be a bit silly for a layman like myself to try to come up with his own treatment for ALS when medical science has been unable to do so for so long, and maybe it is a bit.  Once I started reading, however, I realized that there is a rather large body of studies and anecdotal evidence indicating various substances and activities that help prolong the survival of people with ALS (PALS as they're know in the ALS world).  There is a good deal frustration amongst PALS regarding the state of ALS research, and rightly so.  The pace at which new treatments are researched and trialed for a relatively rare disease like ALS is frustratingly slow.  The sad truth is that even if someone discovered a new drug that was a 100% overnight cure for ALS today, it's unlikely that it would get approved by the FDA in the average 3-5 year life span of a person diagnosed with ALS.

With the medical establishment no help it's off to Dr. Google to figure out what to do next.  The best place I've found for advice and summaries of research are the forums on the ALS Therapy Development Institute (ALS TDI).  There are many well read and knowledgeable people on the forum, all seeking ways to treat their disease.  The research papers are a bit daunting at first, but you do get some ideas with how to manage the disease.  One long time member of the forum has a rather extensive protocol of OTC supplements he claims has kept his ALS from progressing for 9 years.   Here's the list of supplements he's taking:

Light beer, 32-64 ounces (source of ethyl alcohol, and rehydrating agent)
Eggs, a source of lecithin, as well as other good nutrition: two a day.
B-12 methylcobalamin sublingual: 5 mg
Acetyl-L-Carnitine 1.2 g
ALC Arginate 1.3 g
Alpha Lipoic Acid 1.2 g
N-Acetyl-Cysteine 2.4 g
Taurine 2 g
Trimethylglycine (Betaine) 750 mg
Ester-C 1 g
Gamma tocopherols + tocotreinols 470 mg
High gamma vitamin E mixed tocopherols 480 mg
CoQ-10 super ubiquinol 100 mg
B-complex “Balanced B-50” Nature Made one caplet
D 2,000 IU
Flush-free niacin (inositol hexanicotinate) 320 mg
Magnesium citrate 320 mg
Selenium 200 mcg
Milk thistle extract 80% silymarin 350 mg
Lithium orotate 10 mg as lithium
LEF optimized Ashwagandha extract 375 mg
LEF super bio-curcumin 800 mg
LEF mega green tea extract 1,450 mg
Resveratrol 320 mg
Cordyceps 520 mg
Omega-3’s: variable, typically 1 gram/day

 Wow.  He estimates he's spending $300 a month on supplements. I haven't started anything nearly that extensive yet, but I have learned some interesting things.  Strange and counter intuitive things like the fact that a low body mass index (BMI) both increases your risk of contracting ALS and decreases your survival.  Alcohol is good for ALS patients, as is having high cholesterol.  While I'm not about to become an overweight alcoholic, it does open your eyes to the fact that you really need to have an open mind about what to do.

So what am I doing?  Mostly simple things... avoid weight loss, a few supplements that may have some efficacy in treating ALS, a daily bit of alcohol.  I'm still riding my bike regularly, though I avoid going hard as it takes a lot of time to recover from hard efforts.  I try to avoid sitting too long at work and I do some exercises I hope will help stave off the progression of ALS.  I walk a lot.  As I research more, I'll probably add more supplements... who knows, I may even end up with a list like the one above (probably not).  The takeaway from all this is that you've got to do something.  That "3-5 years" statistic really seems to apply to people who just do what their doctor tells them.  It may all just be psychological, but from what I've seen is that those who are actively trying to go beyond what they're being told, the average seems to be much longer and I intend for that to be the case for me.