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My local VA now carries Kate Farms (only in patient). Medicare and other insurance cover full cost. I went to tube feedings full time immediately and had no issue with having to try crappy corn syrup based products first. Just say you will tube feed only before discharge…what you do at home is...

Are you already in the VA Healthcare system? My VA ALS Social Worker has been very helpful. I was literally handed paperwork for handicap van (35k), home tenovations (up to 100k) and paperwork for 100% disability the day diagnosed. Still had to go thru a VSO, but so much better with her help...

I have severe bulbar onset ALS that seems to be rapidly progressing. Dx’d 3/2020 and arms/shoulders and legs very weak. I have had a PEG tube since 10/2020. Using Kate Farms 1.4 or 1.0. Last several weeks have had severe acid reflux. Tried Prevacid 10 mg twice a day; no impact. Now using 30 mg...

Hi Sandy, the path you are on sound exactly like me a year ago. Check out EverythingALS and HealingALS for other things to consider.

I am also a veteran getting most care at VA. Already have PWC, Rollator, van. SSDI application was flubbed up; not put on Medicare immediately as was just recently diagnosed (3/2020). Also have Natl. Assoc. of Letter Carriers-Cigna, and TriCare health insurance. Have PEG and 99.9% food is...

Does anyone have advice on how to adapt to a Trilogy while having severe bulbar nerve symptoms? That means that my lip seal is weak, so my cheeks puff right out and air gets blasted out of my mouth when the Trilogy ramps up the pressure. I use a chin strap and full face mask. I have had the...

Hi Frank, fortunately, my local VA - West Haven, CT, is certified as an ALS Center of Excellence. The team has been incredibly proactive and responsive to all our VA benefit questions. As my son said the other day, "geeze Mom, keeping track of all this is life a part-time job!" I've had all...

Gotta love the military humor! Thanks for posting. How many veterans are on the site? I’m a retired Navy Hosptial Corpsman (medic to you non-Navy and Non-Marine Corps folks). Was just diagnosed in March 2020 With bulbar onset ALS and am very fortunate to be in VA care; cannot imagine how anyone...

Hi, I am a PALS with Bulbar symptoms. My son downloaded “Text to Speech” to my iPad; it is quite effective. He also bought me a Blue Tooth connected iPad keyboard; I keep them together in the nice carrying case. Text to Speech is a free program, but I paid the $4.99 to remove the annoying pop...

I have to disagree. If you feel something is off in your body, pursue it...only you know how you feel. For the past 1 1/2 years, I was telling my Primary Care doctor that pills were getting stuck in my throat, and sometimes liquids would go down the wrong way and I would choke. I also had a...