RankFamily Archives: February 2005
Tuesday, February 1, 2005
We moved into a new house on 22 December. Well, for all intents and purposes. It's the same address, but that's about the only thing that is the same. New walls, new doors, some walls knocked down, some windows bricked up...it really felt like we'd traded places with some well-to-do family whose house we'd always envied when we walked in that afternoon. And what a homecoming it was. All the neighbors were there, many of the people who had donated time or resources were there, and two television stations and a newspaper reporter. Overwhelming falls way short as a description. New fixtures, new paint, new furniture, new appliances, new floor...and all the people. And how it happened is equally as impressive as the result.
Last fall, all four kids were enrolled in gymnastics, and through gymnastics, Linda met Kerri Busby, who's husband Bo also has ALS. (Talk about your coincidences!) Linda mentioned that we needed some doors widened (to accommodate my wheelchair), and Kerri suggested that we let her brother Sean, a general contractor, come take a look. Well, Sean came, and upon inspecting our house and assessing our needs, added to the accessibility checklist. When we told him that we needed to take small steps due to our financial situation, he told us that the work would be done at no cost to us. As if that weren't enough, he asked us to make a wish list of things that we'd like done. When he got the list—which he told us was too small—we met Bo and the seed of the plan to give us a mightly leg up was germinated. After some walkthroughs with an architect, and some preliminary prep work, we were moved to a house in Horseshoe Bay, a resort community about 45 minutes away, for the better part of a week while the work was getting done. Much of what was going on was intentionally kept secret and held as a surprise for us. To employ a drastic understatement, the element of surprise was effective.
The center ring of the media circus turned out to be People® magazine, who sent a reporter and photographer to document our story at the beginning of January. The issue should be on newsstands in a week or ten days.
Well as for my health, the fight is going mental now. I've had a few episodes of panic, mostly associated with getting food in my throat that I couldn't swallow. No airway blockage, but that has been an anxiety trigger all through this illness: the inability to swallow something and have it "stuck in my gob". So to ameliorate that situation, I've laid off the solid foods. Well, mostly. Is cheesecake a solid food? I still eat soups, yogurt, applesauce, and stuff like that. Swallowing thin liquids takes more attention, though. I have to take a sip, and swallow it in multiple, small quantities. Other abilities are slowly slipping - my hands, for example. I have to walk a fine line between what I can play and what sounds good when I play with the band now (next gig: Fri., 4 Feb. at Tazza Fresca on Guadalupe, btw). It's a study in minimalist musicianship. My walking keeps getting slower and slower, and bending over to pick something up off the floor is an adventure all its own.
But good things are happening. "They" induced an embryonic stem cell to differentiate into a motor neuron in the lab. Such cells could, in the future, be used to replace lost motor neurons. That's super hot. So, as it always has been, but now more than ever, it's only a matter of time.
Oh, and to avoid castigation from my younger brother, I will be more diligent about updating the blog more frequently. (I know..."promises, promises...".)
Posted by joe @ 02:07 PM CST