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  1. jeanG

    Not being able to eat/drink

    Hi Colleen15 - nice to meet you! I have bulbar onset as well.
  2. jeanG

    Not being able to eat/drink

    Hi Lisa ~ got the feeding tube in December 2022. At that time, I could still eat some things by mouth and could still sort of chew. Now only really soft foods like mashed potatoes. Do you find that you really can't "taste" it after the first 2-3 small bites?
  3. jeanG

    Not being able to eat/drink

    I have bulbar onset and can no longer eat/drink via mouth. It is driving me insane! I grew up, as a lot of people did, with a lot of family activities that involved food - family picnics, Thanksgiving dinner, birthday parties, etc. Also, eating out was always a treat -- dinner with friends...
  4. jeanG

    Relyvrio taste

    I couldn't do the Radicava via mouth. Just couldn't. Didn't even try the Relyvrio until I got my g-tube. It has made ALL the difference in taking medicines. There is no way I could get foul tasting medicine down let alone pills.
  5. jeanG

    Denied ss/dis, feeling run over, just need to blab a little if it's okay

    Thank you all for your thoughts and advice. Looking into LTD thru work and appealing ss decision. I'm so sorry we are all here.
  6. jeanG

    Denied ss/dis, feeling run over, just need to blab a little if it's okay

    Hi all, I kind of just need to talk this out and am wondering if something similar has happened to anyone else. I was just denied ss/dis after a non-medical review. I haven't gotten the letter explaining why I was denied but I know why - I am still working full time. I can no longer talk or...
  7. jeanG

    Late introducing myself

    ❤️
  8. jeanG

    Late introducing myself

    Hi all. Just wanted to say thank you to all of you for being there. I have Bulbar ALS and have lost my ability to speak and am near to losing my ability to eat via mouth.
  9. jeanG

    Peg is a Good Thing

    I had mine put in December 2022. The biggest thing for me was being able to take my meds easier. There is no way I could continue to swallow pills. It is so easy now! Also, I am unable to swallow liquids so it is huge for me to make sure I get enough water.
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