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My heart breaks for you. The end is near for my mother, and it’s agonizing. I don’t want to forever lose the feel of her hand in mine, yet I don’t want her to hang on if she is ready. I was just about to suggest interviewing hospice agencies when I saw Laurie’s response come in. In my...

This is all so helpful. Thank you for your kind and thoughtful words. I thought I’d try my best with Atul Gawande’s five end-of-life questions when I see her tomorrow so I can try to get a better sense of her thinking. We’ve talked about things a few times, but it’s so effortful for her to talk...

I was able to get my mom in for PFTs yesterday. Our clinic appt (which, it turns out, it just a diagnosis confirmation) is still a week away. However, the tech who did the PFTs wasn’t able to complete the test because my mom didn’t have the strength or ability to do the tests. She couldn’t get...

Thank you all so much for your help. The diagnosing neuro did not do any tests of her respiration. We weren’t able to get an appointment at Hopkins for three more weeks, which greatly worries me. I’m on the cancellation waiting list, so here’s hoping. I’ve reached out to Hopkins to explain what...

I really appreciate the straight talk and honesty. Thank you all so much. Regarding a facility: Where she lives now is a continuum-of-care setting—they can accommodate a lot (including, specifically, biPAP and PEG—I asked) in their assisted living setting, and that’s where they are recommending...

Hello, all, My mom, age 71, was officially diagnosed with ALS last Thursday. It came as a shock to her (and she still doesn’t actually believe it—she doesn’t want to tell anyone until she is seen at the ALS clinic and they confirm the diagnosis), though it’s the diagnosis I was expecting. I...

Yes, exactly—I’m concerned about FTD but relieved (from a genetics perspective) to hear that my uncle’s symptoms could also be consistent with Alzheimer’s. I will ask about C9. It’s one of those things where I’m not sure if it’s better to know or not.

Hello, all, Thank you in advance for the wisdom of the group. My mother is likely to be diagnosed with ALS at age 71, though I’d estimate her symptoms began at age 68 or 69. Her brother, age 74, was recently diagnosed with Alzheimer’s, but the presentation sounds suspicious to me—paranoia...