• Jan: CA, pals replied to the topic No longer eating by mouth in the forum Living With ALS 1 year, 1 month ago

    It is hard to say when ALS started for me: was it January, 2020 when I suddenly got sick and three days later my neighbor drove me to Urgent Care at 8:30 on a Friday night?  I was diagnosed with Pneumonia and Bronchitis, both a virus.  Or was it in April that year?(I was self quarantined since February 24th because of COVID)  I decided to go for a walk that evening figuring that I  would be safe.  It only took a half a block before I started shivering and figured I ought to have put on a warmer jacket.  From that night on,  my left jaw would shiver, quiver, shake,… was that when ALS started?  I search the internet.  Nothing.  Going back to Pneumonia and Bronchitis,… since that time, my voice always sounded like I had a cold or just getting over laryngitis.  One doctor said I might have had the virus COVID and the excessive coughing “triggered” a weakness in my throat area. The quivering of my jaw continued.  Who knows?

    July, 2020 started a round of Doctors, Specialists, Therapists. tests and in February, 2021, I started Riluzole and now am on Radacava.  Oh,  problem with my jaw? was actually tremors.

    Now, I am unable to speak, drinking water is impossible and I cut up my food as if I was a two year old toddler.  I agree with Carol, I want nothing to do with the challenge of going to a restaurant with a group of people.  I eat alone (I live alone and that makes it easier for me) and eat my meals usually in front of my laptop.  I am mindful of every bite I take and I chew and chew. Yes, I choke sometimes and go thru several napkins at every meal.  Ohhhh, that salvia, I mean I’m a pretty classy lady,… and now I’m drooling? Yes, excessively!

    Elaine, have you tried Thick-it?  My Speech Therapist recommended it.  It’s not great at all, but I’m getting used to it.  Have any of you others tried it? Or a different brand?  You are soooooo right Kathy, this is overwhelming and I’m so thankful to you for posting on this site. Kudos to Kathy! I really have no one to talk to that could possibility understand like people on this site.  Mary Kate, what app do you use for communicating?  I’m still on paper and pen, sooooooo frustrating!

    I wish we could all get together in each others living room or my patio and share our challenges and give and get ideas from each other!  I need you.  It’s tough going through this, however here are some thoughts that keep me going—>

    — “I eat to live , not live to eat”  (Socrates? or Ben Franklin?)

    — I am more than my voice!!!

    — This is bad, but thank God I didn’t have COVID and die,… I’m alive!!!!

    Stay in touch,  Jan


    • Jan,

      This is such a heartfelt and genuine post, thank you for contributing. I love your quotes and your sense of humor. Also, I love that you acknowledged some of our forum members and their contributions. ALS is horrible, I know I don’t have to tell you that! But, I think people need to know how they touch another person’s life and how they help. We try to focus on positives; however, we also know it is important to discuss how to handle and approach the challenges of LIVING with ALS. Kathy is great at tackling things head on and bringing up the hard topics as are many others on this site. Thank you again for sharing. You are a vital part of this community!!

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