Monday, December 27, 2004


I feel like such a lazy martyr. In the email groups and web sites that I read (usually don't read), people are exhorting each other to "never give up!" and to fight the good fight. And there are people who have compiled exhaustive, very well researched and well-thought-out websites about their own experience with ALS.

And I've barely read them.

When I started this blog I said something about how I would give myself a graduate-level course in ALS. That hasn't happened yet, and while I do nibble my way slowly down the self-education trail, I also find that I just don't feel like making my own personal story of Lorenzo's Oil. I like to live, to relax, to go to the park with my kids. And sleep. And read stuff that's not about ALS.

Someone said that complacency, or surrender, are not good responses to ALS. Deadly, in fact. But I don't feel I am overly lazy, I just feel that I am lazy to the appropriate degree. I am an extremely energetic person when doing things that make me feel good, and yet I also have a rule not to flog myself into doing things I don't like. It's not that I don't like, or am afraid of ALS research, it's that, right now, I am not so much into it, and I accept that about myself.

I have started today, taking a double dose of DHEA (100 MG instead of 50). It may be an emotional decision (in fact I know it is). It's also lazy that I haven't done any research or even asked my doctor. My thinking is that I am losing muscle mass and I want to gain some of it back in my light workouts. Particularly the neck and chest muscles, which may be still capable of bulking up, unlike, for example, my left hand muscles. DHEA is a hormone precursor that leads ultimately to things like testosterone. I haven't felt any kick from it or the creatine like a normal person would, so I am doubling. I did talk about it with my wife and we agreed to both be on the lookout for increased irritability and anger.

My hair may fall out?

Two friends who I rarely speak with have now informed me that when I talk, I sound like I have just woken up, or that I sound like I am speaking slowly and lazily. I hadn't noticed that. I can, when I try, repeat fast movie dialog or sing song lyrics at a normal pace. I sometimes practice rapid speech, successfuly. But I think that there must simply be a lazy quality to how my syllables form. So what you get is rapid lazy talk.

My son makes a policy of leaving the light on in his room whenever he leaves it. I remember doing that as a kid, and being told not to. To no avail.
Weblog Commenting and Trackback by