Tuesday, April 06, 2004

Jerry's Kids

By the way, the whole ALS clinic experience is pretty swank. The first time we went there we didn't ask about validating parking, and we paid a pretty penny. This time we did ask, and got the stickers, and the total parking fee was: zero! I don't know who picks up the tab for the parking, but you can see that the clinic really wants to make people feel comfortable by removing petty obstacles and annoyances. Part of the sense of swank and support comes from the MDA (Muscular Distrophy Association), which also helps people with ALS. One of their people talked to us. The MDA is famous for the Jerry Lewis telethons. They also have a lot of support that they can give to ALS patients. Examples include recycled chair lifts for less than a thousand dollars (devices which move a person up a flight of stairs) when normally these would be closer to $10,000, as well as -- get this -- sanity grants to provide a temporary caregiver while the primary caregiver (read: spouse) gets away for a while.

I noticed that the clinic people gently and subtly assessed my wife while we were there, kind of the way you would look at a used car. They want to know if she will handle potholes well.

I am grateful for their help, and for my wife's help, but what they don't know is that I plan on still being able to take care of myself five years from now.

The nutritionist pointed out an interesting but not revolutionary study regarding hypermetabolism in patients with ALS. It seems to be an effect rather than a cause. And unfortunately the study does not show up in my list of 500 PubMed abstracts.

The thing that is in short supply right now is time. We have two kids. I am supposed to do stretches, get exercise, sort my pills, arrange for bloodwork results to be faxed again since they lost the first fax, learn about 'phrase binking' (more on that later), do some other stuff I am not blogging about (yet) ... and that's all before even thinking about the cool stuff I actually want to do, the writing, reporting, programming, etc. I guess if you are single you don't know what I am talking about.

By the way, I often catch myself saying "single" when I mean "childless." In my mind it really is the same thing. I respect the marriages of people who do not have kids, which are just as serious and real as those of people with kids, but in terms of stress and work levels, people without kids are "single" in my mind. Unfair? I dunno. I have to make a phone call now.
Weblog Commenting and Trackback by HaloScan.com