Monday, July 7, 2025 – Day 328

Monday, July 7, 2025


Good morning, and welcome to a new week of life.

First, sending love and condolences to my cousin Renee and her husband Doug, who lost their 16-year-old dog, Posey, over the weekend. I’m so sorry. 😢

ALS update.

WEIGHT… I started my new diet a couple of weeks ago…though realistically, it’s only been a week since I finally started having success with my formula feedings. That first week was rough. I was nauseated, in pain, and bloated for days after the surgery. But since then, I’ve managed to gain two pounds. That’s a great sign that I’m finally getting the calories I need.

STORING THE TUBE… The whole feeding process is getting easier as I learn a few tricks and pick up helpful tools online. When I left the hospital, the tube coming out of my stomach had to be taped to my body to keep it from dangling outside my shirt—or being stuffed down the front of my pants. (I feel like there’s a joke in there somewhere. 😊) After a week of yanking off tape—and hair—I ordered an elastic band that wraps around my waist with built-in pockets for the tube. Much better. No idea why the hospital doesn’t just send people home with one. It’s a simple and cheap solution.

FREEARM… Another big improvement came from switching to gravity feedings instead of pushing the formula in quickly with a syringe. That change, along with a suggestion from Peggy, made all the difference. Holding the syringe up by hand to let gravity do its thing was awkward, though, so I grabbed our paper towel holder and taped the syringe to it. Voilà—hands-free feeding! Then Peggy recommended a device called FreeArm, which is made to hold a syringe or feeding bag and (as the name implies) frees up a hand while feeding. It’s simple and effective. If you’re curious, here’s the website: freearmcare.com

FEEDING EFFICIENCY… With all that, I’ve gone from 45-minute feedings down to less than 30, and I’m no longer feeling any ill effects from the formula. Big win. And honestly, this whole system is so much better than trying to force down three full meals a day. I’m rarely hungry now, and eating feels more like effort than enjoyment. So I’m doing two formula feedings and one regular meal a day. That seems to work well—and it leaves just one meal for Cindy to make or convince me to go out for. Both work.

BLADDER CONTROL… One unintended side effect of this new feeding routine: I now pee about 8–10 times a day. Between all the formula and the water, I’m definitely staying hydrated. The downside is that muscle weakness is affecting my bladder control. When I get the signal to go, it’s an urgent signal—and it doesn’t give me much warning. The bathroom needs to be close, or I could be in big trouble. I’m genuinely worried I’ll fall during one of these mad dashes, and if that happens, well…let’s just say there might be a cleanup required in aisle 5. So far, so good. Physically, I’m still managing to walk around the house…shuffling from room to room and plopping down when I get there. I use a cane about half the time but haven’t graduated to the walker yet. It’s not far off.

DRIVING… I’m still driving, though I keep it local. I think I’m driving well. Cindy might say otherwise…she’s definitely more alert when I’m behind the wheel. The bigger issue is sitting for too long. After about an hour, my backside starts aching. I’ve clearly lost some padding back there. We’ve got a few road trips coming up, so I’m hoping we won’t need to stop too often on my account. I’ve always hated road trip stops… but here we are, adjusting again.

STANDING… Getting up from bed…or from most seated positions…takes a few tries now. I tend to lose balance and fall back into the chair once or twice before I can steady myself. Then I use furniture and walls to help stay upright. That’s one of the reasons the walker is inching closer to full-time use.

VOICE BANKING I’m also working on voice banking again. My voice is not getting stronger so this is important. I did some recordings months ago, but I’ve since learned there are better tools available now. I’m setting up a little mini studio at home and plan to work with a company called ElevenLabs (thank you to those who recommended them). It’s time to stop procrastinating and just get it done. It’s one of the few things I can still control, and I need to stay focused. If I don’t, I’ll end up picking from one of the AI-generated voices. Who knows—maybe I’ll like theirs better than mine. At least I’ve got options.

WRITING… As my hand function changes, so has my handwriting. It’s more difficult to hold a pen in my hand and write. I can still do, albeit slowly and somewhat legibly. Although I’m not that far off from trying to print as it won’t be close to being legible. I had to bring in Cindy to help with my thank you notes or they would not have been completed. If I missed sending you one, I’m very sorry. I’m trying…

So, all in all, I’m doing fairly well. I don’t love the progression of my ALS symptoms, but the changes have been gradual enough that I’ve been able to adapt. There’s a lot of support and equipment out there that makes this disease…at least for now…manageable. I know there are big hurdles coming, I just hope they are a long way down the road.

Have a great Monday.

Love you guys!❤️