1. Reschedule visits if they have a cold or worse. A cold could kill G. Probably will at some point. Sigh.

2. Accept us rescheduling for any reason, but mostly because G is exhausted.

3. Respect the window of time when you are invited to visit. So many people overstay. We love them, but a few hours of visiting (and translating for me) is…

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G is no longer able to speak or get around well, he’s mostly housebound. This is really hard for him because we have a large property with a lot of interesting things going on, all the time.

We have trail cameras set up and I switch-out the disks when I have a chance. He LOVES sorting through the images – sometimes just wind whipping a…

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Similar to Len-Jax, I keep our friends and family informed about the journey G and I are on, and also similarly, the feedback is very positive. The ALS Association has a portal – LotsaHelpingHands – which we use. Not classic social media which we avoid. Numerous folks have responded that they need to get their affairs in order, too, or…

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We’ll be “zooming” with friends and family. I’ll make a semi-special meal for myself and G will stick with the Compleat feeding tube food, tonic water, and prune juice, mmmmm, all he can tolerate these days. But we will set the table with wedding-gift plates from all those years before, and a little LED candle. We might have some visitors,…

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We are well known in our friends-and-family circle as the funny, often punny, ones. I wrote this year’s holiday card in limerick format, from the perspective of our cat. It helped that our trail camera picked up bob kittens as well as the adults, so we had some interesting photos to share. We do try to have some non-ALS time for sure in our…

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You are welcome, Amanda, and good energy to you.

We are pro-science and have been on the cutting/bleeding edge of the clean-energy world for decades. We understand that some people need to “go first” in order for others to have an easier time of it – whether that’s with solar energy or more data points to cure ALS. We want to normalize solar…

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My husband and I are both enrolled in the ASSESS ALS research project, he as a patient, me as a control. Each month we both do on-line survey and enunciation/cognitive testing on line. Every quarter he has bloodwork and a (optional) lumbar puncture done. Each year I’ll do the bloodwork. This is a big study and they are actively looking for…

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I wish my husband “G” had banked his voice immediately after his diagnosis. With bulbar onset and a year+ of misdiagnosis, we lost a precious opportunity. When he did get to bank his voice, it wasn’t his original voice, still better than nothing, but the voice and storytelling are now gone. Thank goodness for some adaptive tools.

This site…

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Hello all,

My husband has bulbar-onset ALS, diagnosed July 2024, with symptoms going back until at least November 2022. After his PEG feeding tube was inserted in March 2025, we had Home Health professionals come to the house for a couple weeks, including physical therapy. The PT recommended a tabletop/floor plug-in exercise bike to keep…

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Hello again, here’s an update:

Great news! Although it took about a month of frustration, phone calls, and back and forth, G is now on Radicava, having taken his second dose this morning. Hoorah! We cross our fingers in the hopes that this will help preserve some quality of life.

It was an important lesson for us and has helped us make our next…

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Thank you all, this is so helpful. I very much appreciate your sharing and experience. xo

G was misdiagnosed with and treated for myasthenia gravis since last year. Just got the bulbar-onset ALS diagnosis. We are devastated, and so busy with non-stop appointments. Trying to catch up. A parallel universe we were not expecting. Thanks for inviting us into the club. We’ve been on a supposed gold-level health insurance plan through the…

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