Linda and I returned from the MDA/ALS clinic in Houston. Reinforcing an emerging theme in my life of late, I wish it had gone better, but I'm sure grateful for how well it went. My forced vital capacity (FVC) dropped by about 6%, from 80% (of predicted for an adult male of my age) to 74%. That was the worst news of the visit. It was offset (eclipsed?) by 5 words from Dr. Appel to a nurse when considering my eligibility for inclusion in studies BCM is conducting. The words were, "He's definitely a slow course". When Linda and I coaxed some elaboration out of him, he confirmed that my disease is the form that develops slowly. This is tantamount to doubling my life expectancy, according to the expertise of Dr. Jackson in San Antonio, who is the other physician whose care I'm under who also happens to be the head of a neurology department at a school that does research on ALS. My hand strength had dropped a little, but I set a personal best in one of the fine motor skill assessments for my occupational therapy grading. The test is to put a cylindrical peg (measuring about 2 cm. in length by about 5mm. in diameter) in a peg board, followed by a washer around the peg, and finally a small metal sleeve around the peg and over the washer. I do this as many times as possible in a minute. With my right hand, I did twelve sets, which was a record for me. My left did about 8, down from 10 the last time, but I knew that was coming. I've noticed some loss of lateral range when I play piano chords with my left hand, and some fatigue problems too. Another problem with playing piano is my upper back fatigue. But, I got a figure eight brace from the orthotist at the clinic. An arm goes through each loop of the "8", and the loops join between my shoulder blades. It is comfortable for a couple of hours, but my shirt tends to bind in it. I expect to get a lot of use out of it, though. And, it was free. (Free anything is almost unheard of in the medical industry.)

Moving inward, I can report that my changes are not all negative. For example, I used to go bonkers when the kids were all running around and screaming. We have a central structure in our house that provides a natural jogging track upon which to enjoy all manner of chasing games, especially those accompanied by maniacal, shriek-punctuated laughter. I would particularly cherish those "games" that escalated into a full-blown fight, with at least one child hurt and crying at its conclusion. Well, I don't know when it happened, but I now seem immune to that brand of aggrivation now. I still do have the energy/ability to break up such episodes, but I don't seem to mind them anymore. I usually only step in when I see things getting out of hand; i.e., when the first real threat is uttered, or the first hand is raised in anger. I don't know when it happened, but the childrens' noisy, chaotic playing has turned into a source of pleasure for me rather than a source of stress. It's been proposed to me by a psychologist that I have ADD and a condition called "sensory integrative dysfunction". That basically means, as far as kids are concerned, normal kids just being normal kids pushed by buttons. The surprising and happy news is that that seems to no longer be the case. Maybe the ALS ate the ADD and SID. Maybe this is fronto-temporal dementia from the ALS. (You don't know about FTD in ALS? Tsk, tsk...) I'm not going to look this gift horse in the mouth, though. It's just nice to find a diamond in the mud once in a while.