The roof, the roof, the roof is on fire.... Punishing heat, rampant humidity - summer in Austin. Though I shouldn't complain, I've weathered it quite well from my recliner. But still, I pledge for my second retirement, I'll be in a place where summer doesn't last 9 months.

Lots of action since last posting. Most notably, my best male friend suffered a spontaneous pneumothorax (collapsed lung) and had to have surgery. And not just the kind where they sprayed a can of Fix-a-Flat up his...nose, but in a hospital with nurses and the whole maghilla. I was in Corpus Christi when it happened, and it felt like being on another planet. He pulled through fine, but it wasn't a given. The doctors tried several times to re-inflate the lung, but in the end, it took a staple to close the hole before things were put right again. It felt strangely selfish worrying that he might die, worrying that I might be deprived of his company. If things had turned out badly, he would've left three kids and a wife behind, but I only thought of their loss after I had thought of what his death would mean to me. Maybe its natural, but it just felt ego-centric at the time. Fortunately, that's not a concern anymore.

My visit to Corpus was fun and tiring. I went to a baseball game, the Texas State Aquarium, and shopping for sunglasses. It was great to see my family, and a good time was had by all.

Another big development is a "share the care" website my respiratorily challenged friend and his wife started up for me. With this site, people can log on and see what needs we'll (as a family) or I'll need for any given date and time, and be able to sign up for it. Hopefully, the caregiver list will include at least 50 names or so, so the work should be fairly distributed. Needs can be anything from picking the kids up to helping me (feeding, transferring, shaving, etc.) or really anything that results in a gap of what Linda can cover. It's not foolproof, but you know the saying—give me something foolprooof, and I'll make a better fool.

I think the kids are anxious to get back to school. Cole starts middle school, Hannah has always liked school, and the twins are starting kindegarten. Ryan and Pat ask almost every day when they'll be allowed to attend. If only the enthusiasm would last for twelve years.

As for me, I'm relying on the wheelchair extensively to get around. My walking is simultaneously slow and exciting (at least for me). I don't "free-walk" anymore (my term), meaning I need something to hold onto as I lumber around—tables, walls, another person. Balance depends on muscles to enforce it, and I'm coming up short in that department. I avoid speaking whenever possible, and only my immediate family can understand me. I am certainly not in the early stages of ALS anymore, by my reckoning. But I'm so glad I didn't lose both speaking and hands. My left hand is pretty far gone, but I'm still typing with it. I can't move my right foot, toes, and ankle at all. Odd that my left hand and right foot (opposite sides of body) are affected. I can move my left ankle and toes a little. I've lost so much muscle on my back that I need to lean back on a hard surface obliquely to avoid my vertebrae. My neck gets tired quickly now, too; car rides are a killer.

I was mumbling to Linda the other day about foods I miss, and the foods are not what you'd guess. Now before I had symptoms, I was about as far away from vegetarian as I could be. I loved all kinds of meat. But I don't find myself craving it now. Instead, and to my surprise, I miss nuts and cornchips. Or I should say I crave them. Salty snacks, go figure. I also miss submarine sandwiches, and seafood. I watch cooking shows (on the food network), and if you watch tv, you know how many food commercials are on. I find it curious that of all the foods I used to eat, those are the ones I miss. Not really sweets or baked goods, not meat, not veggies. Well, it's odd to me at any rate.

I will post the URL of the share the care site when all the administrative hoop-diving has concluded. Stay tuned, stay happy, and avoid spontaneous pneumothorax—I have it on excellent authority that it's no fun.

Replies: 5 comments

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