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Robert Rigsby replied to the topic Rilozole experience? in the forum A Forum for ALS Caregivers 2 years, 10 months ago
Hey, Y’all: 7/16/20; Bulbar onset. Chewing/swallowing difficulty came early. Proactively, I had placement of g-tube 10/28/19- SOOOO glad I did as all food/nourishment/water/med is by tube now. I mention this because I crush Rilozole and tube it in a 70ml syringe of water. After reading above experiences the idea I present is crush the tablet and…[Read more]
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Robert Rigsby replied to the topic Do you have difficulty eating or drinking? in the forum Living With ALS 2 years, 10 months ago
Hello, Y’all: 7/14/20
I have a feeding tube and it is LITERALLY a LIFESAVER- wouldn’t be here w/out it! All nutrition/water via tube. My response to this subject is this, though: When my throat gets dry and I need to swallow a little water for relief I can get my head/chin in a certain position and while consciously swallow…[Read more]
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Robert Rigsby became a registered member 3 years ago
Hello Robert,
I’m Amanda, one of the co-moderators. Welcome to the ALS Forum. My family has an extensive history of ALS and I have been volunteering for medical research for many years. Many of our members are caregivers or pALS and they are a helpful and caring group.
Please have a look around the forum. You are welcomed to respond to…[Read more]
Hello Robert,
Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns or even…[Read more]