Thanks to Linda for the quick response on the meds list. However, there are some errors in that response.

Sundown and Nature-Made are sometimes the only choices in HEB or Walgreens, and they're almost always the cheapest. However, the purity and quality aren't always the best. For instance, I buy Twinlab Super E Complex (1000 IU) whenever I can, because it includes the gamma Tocopherol as well as the alpha. Some researchers have hypothesized that gamma helps protect against certain kinds of oxidative stress, which, as you probably know, is thought to be one of the active mechanisms in motor neuron death in ALS. Also, the Twinlab "Twin-sorb" CoQ-10 product is purported to absorb 9 times better than standard CoQ-10. Absorption is thought to be a chokepoint in the effectiveness of CoQ-10 as a supplement for ALSers.

I'm not suggesting that you go out and buy Twinlab stuff, or any stuff. I just didn't want to leave the impression that we insist on Sundown or Nature-Made. If there's a sale on CoQ-10 at Walgreens, I'd be grateful for a single bottle of anything. Many weeks I have gone without because it just wasn't in our budget, and having meds to take is the important thing. Which brand they are is a distant second.

Anyway, on to more corrections:

Vitamin C does not have to be Ester C, and I take 1000 mg 3x per day. It does have to be capsules, because the tablest get stuck in my craw.

I don't believe that melatonin comes in gelcaps, and I take 5 micrograms(mcg) at bedtime, not milligrams(mg). The pharmacist would've probably told you that they don't sell melatonin in mg doses had you asked. BTW, if you need an effective sleep aid that good for you, eat some melatonin. But only at the microgram dosage. ;-)

I think that about covers it for the OTC meds.

I've been up and down over the past two weeks. I caught up on some sleep this past weekend, and man, that makes such a difference. My stamina, attitude, speech, swallowing, ... you name it. Everything goes better when I'm rested. And I really think that it takes me about a week to recover from an outing like Jeff and I had down in Corpus. We went wade fishing in two spots, and I loved every minute of it, but I am noticing a trend with my recovery curve when I do things like that--it spans multiple days. Same thing with the offshore trip in July. So I'll have to factor that into the mix. The mix-ee-izzle. I am not really noticing any marked progress in any muscle group. (Linda may disagree.) Every muscle group is experiencing symptom creep that just kind of inches along, insinuating advancement rather than showing it. I do everything I can to fortify my defenses while I wait for medical science to pony up the cure. The cure-ee-izzle. My job is to sit tight and keep my ship afloat till the Coast Guard arrives, in the form of stem cell therapy, conventional pharmaceuticals, some mixture of the two, or something new out of left field. Will I win? Yes. I will be alive to sell all the equipment we're buying for me. I will get my speech back (though I may not let anyone know it). I will skate again and climb again and scuba dive again and be there for my wonderful children and my beautiful wife. I will have a firm handshake again. I will not cave in. I will not bend over and "accept my fate". I will not let anger, frustration, resentment, bitterness, shame, or sorrow dominate me. I will not slip out of the lives of the people around me with equanimity and dispassion. I will not stand at the helm of this sinking ship with ceremonial stoicism, but rather I will bail water like a person who believes that it will save his life. I will cheat this disease out of a victim. I will use the existing resources around me to maximize my advantage while I discover and utilize new resources. Will I win? Yes, but not alone.

Replies: 3 comments

You've got me there all of the way.

Posted by John Austin @ 09/13/2003 05:15 PM CST

Damn right.

Posted by Jeff @ 09/03/2003 10:10 AM CST

Damn Right not alone brother.

Posted by John @ 09/01/2003 12:33 AM CST