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    Dobhoff NG tube and Real Food Blends?

    Hi Jackie. We used Real Food with my mom and it was definitely thicker than others we had tried (probably even the thickest). I would dilute it with a bit of warm water sometimes, and I would also occasionally microwave it to thin it a bit more. We also tried the Kate Farms and the RF was much...
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    My mother's ALS started in her tongue...

    Hi Siri, my mom had bulbar onset ALS (it also started in the tongue and throat). It sounds like her symptoms and progression were really similar to your mom's -- she had pretty extreme fatigue early on because of the challenges breathing. She lived for about 16 months after her official...
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    Advice before testing

    Thanks Nikki. As always, so grateful for your expertise. And that's a good suggestion to check with her clinics, hopefully they have some good suggestions or resources on counselors. And for me, I think choosing not to know would actually be my decision out of fear. But I'll definitely try out...
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    Advice before testing

    Hi everyone. My mom was confirmed C9 fALS and now I'm starting to think about testing. I'm a bit of a hypochondriac so it's very tough not knowing and analyzing every muscle quiver, jerky reflex, and every time food goes down the wrong way. I know that I should consult a genetic counselor first...
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    Trilogy discomfort in end stage

    Hey all, We're having tough days. My mom's breathing issues have increased and she's really uncomfortable and short of breath. We're giving her morphine to try and help with a little success. But the real issue is that she's stopped tolerating her Trilogy today - every time we put it on her...
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    Choosing a hospital bed

    Thanks so much! I'll ask about the motor and a non-bariatric model.
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    Choosing a hospital bed

    Hi everyone! We're trying to get a hospital bed for my mom, and a local DME suggested that we get a Drive Prime Care Model P903 (with his description: "it is a superior full electric bed compared to our standard bed and comes with an upgraded 5 zone mattress.") I've attached the PDF flyer that...
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    Extreme fatigue

    Hi Nona, she gets a can of formula (2cal) 3x a day, often times along with prune juice. We were doing 4 cans a day, but she was gaining a lot of weight, and we wanted to slow that a bit.
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    Extreme fatigue

    Hi everyone! My mom (PBP, dx a year ago) has been dealing with extreme fatigue recently. Fatigue and lack of energy was one of her first major symptoms, but it's really ratcheted up in the past two weeks. She spends the whole day in bed, and short trips to the bathroom with the walker deplete...
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    Mother diagnosed with Progressive Bulbar Palsy, what can I do?

    I'm so sorry to hear about your mom. My mom was diagnosed with PBP recently, and it's a challenging rollercoaster ride. Some things that would be helpful to start thinking about are communication backups (my mom uses text to speak apps and a whiteboard, it's helpful to start practicing with...