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    • #20276
      Kathy stitz
      Participant

      I have had bulbar ALS for a little over a year now.  A year after my diagnosis, I had to get a feeding tube and was still eating some by mouth.  Now, though, I have been told to no longer eat anything by mouth because I have a high risk of choking or aspiration.   My birthday was last week and I had two birthday parties at a restaurant and I just sat there and didn’t eat anything while everyone else ate their meals.   I was happy that they enjoyed their meals but it’s really hard to not be able to eat anymore.   Sometimes I have tried to eat but then start coughing.   I’ve been told that it is up to me.  If I want to take the risk then I can try to eat.  Is anyone else in this situation and how do you deal with it?  Thanks so much!

    • #20287
      Carol
      Participant

      When I’m eating that’s all I do. If I try to talk, or even listen to ongoing conversation I will choke. I haven’t been to a restaurant in over a year; have no interest in that challenge. When family or friends come over for a meal, I take a few bites, leave the rest for later, and focus on the conversation.

    • #20294
      Elaine Clark
      Participant

      I also had a feeding tube place 6 months ago.It is very difficult to watch everyone else eat and enjoy their meals, especially when the food is appetizing and I want some. At first I’d try a few bites just for the taste, but now I’m no longer interested in trying it all my feeding is via peg tube. The coughing and risk of aspiration is just not worth it to me. I have trouble drinking anything too. I manage to drink one cup of coffee a day ,though it takes me over an hour to drink it. I cannot speak either so it has really affected my social life.

    • #20298
      Mary Kate Smith
      Participant

      Hi Kathy, I’m on my 3rd year with Bulbar and I’ve had a feeding tube for about a year now.  So glad I did as I was unable to eat and not getting enough calories or nutrition. I also have have lost my voice and use an app on my phone for communications.  It’s hard to not eat when everything smells so good but I find it helps when I cook for others. I feel a part of everything and it doesn’t bother me to not eat.  It does get easier and you realize,  even though you would rather be eating,  this is what you need to do to stay healthy.

    • #20299
      Kathy stitz
      Participant

      Hi everyone, thank you for your posts and your suggestions.   I am just having a very difficult time with not being able to eat and have been losing weight as well.  I also have a lot of difficulty with speaking.  I’m trying to deal with all of these changes but it gets overwhelming.  I hope it will get easier soon.  Best wishes to all of you.

    • #20332
      Jan: CA, pals
      Participant

      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

       

    • #20336
      Mark S
      Participant

      In my continued efforts to see what support people are receiving, has anyone been introduced to exercises of the sphincter muscles. I know the line of “these are not effected” but I had swallowing test under fluoroscopy which showed weakness, esophagal and Pharyngeal. If my pelvic floor muscles were tested, they would show weakness as well.

       

      I had major lung problems last winter and best guess is I aspirated because of reflux. I was treated aggressively with steroids and did get better. I treat the reflex but also do exercises.

      As I am developing a program for myself, which I will share, it would help to know if this is completely foreign of if your PT and SLP showed you exercises that help.

       

       

    • #20341
      Mary Kate Smith
      Participant

      I saw Jan’s post on excess saliva.  I had the same thing.  My doctor prescribed Glycopyrrolate for  excess saliva and it works.  Hope anyone having this issue will check it out.

       

       

    • #20342
      Kathy stitz
      Participant

      Hi Mary Kate,

      It really depends as to what will help.  I also have that issue and tried what you mentioned as well as the scopolamine patch without success.  Then I had Botox injections into my salivary glands so that has helped to control the excess saliva for me.

    • #20343
      Carol
      Participant

      Careful about recommending meds. 10 days ago I stopped both my bp meds that I’ve been on for almost 3 years. Totally by accident I forgot to take one and my function improved so doc & i decided try going off both. I am no longer dizzy. Today in PT was able to do bunch of moves haven’t been able to do for 2 years.

    • #20344
      Jan: CA, pals
      Participant

      I have been introduced to the swallow test: I have had two! Yea,.. what fun!!! The first was in the Laryngologist office, scope with video camera down the throat, applesauce, cracker, pudding and a viewing on a flat screen. About six months later I had a second swallow test in the hospital with three similar types of food. The food was covered in barium (a white powder) that shows up on a video type of Ex-ray machine. Do you think a barium Ex-ray test is the same as Fluoroscopy test? Or different?

      My video test must have been pretty good because they gave me two discs, one for me to give to my doctor and one for myself. Perhaps, my disc is to autograph and frame or for a future audition? Not sure exactly what I’ll do with mine since I don’t have a disc player anymore and I donated all my CD’s a few years back. Do they still sell them?

      Mark, I never had a PT(physical therapist) or a SLP(Speech Language Pathologist),… had to look that one up 🙂 ‘Went to a Speech Therapist for about six months but ALS did not allow my tongue to cooperate. So basically,… I am a drop-out!

      I’ll confess I don’t know much/anything about the sphincter muscles and YES! if it might possibly, even a smidgen, help me with my speech, I would love to hear all about sphincter muscle exercises. Please?

      Sorry to hear about your lung and reflux problem last winter, I’m certain doing those exercises will make this coming winter a lot easier for you!

      Ohhhh,.. and about the pelvic floor muscles,… lets discuss another time 🙂

    • #20345
      Mark S
      Participant

      Yes the tasty stuff and x-ray is the same.

      I suspect a large survey would show the same thing, no PT and SLP dropouts.

      Here is a video, don’t watch, just listen to it, don’t even try, just listen, if your tongue is fasciculating, just feel it against teeth.

      I don’t know your range and ease, but allow you tongue to rest in a spot and feel your breath pass over and any open and closing of throat.  It’s hard, only a few minutes to start a few times a day.

      You try to increase time and focus not effort.

    • #20351
      Marianne Opilla
      Participant

      I too, have excessive drooling.  The Glycophyrate works, but it gives me insomnia, so I only take it when I am around other people.  I order tissue and napkins in bulk from Walmart, and sit around the house with a “tissue plug ‘ in my mouth.

      I never had a speech study because my team said “what is the point” since obviously, I choke. They also think exercises dont impact swallowing.  For me, I did exercises for speech and swallow but after 2 years the progression is steady.  Check Dagmar’s blogs, I think she has exercises.

      I think the thing that stands out about this thread is that pALS are trying to figure it out for ourselves and there is no ‘standard of care’ between teams.  That is sad since this is the most devastating of chronic diseases.  NO consistancy in care, no recommendations that improve our outcome.  Hit or miss medical care.

      Sorry, but after 2 years of ‘nothing we can do’ mentality I am pissed.

    • #20359
      Kathy stitz
      Participant

      I totally understand your feelings, Marianne.  When you go to the doctor, you expect them to make you better. That doesn’t happen, though, with ALS.  There’s no cure for it and little that the doctors can do to help pALS.  I have often felt frustrated, disappointed, and sometimes angry.  I have also felt depressed and hopeless.   It’s hard to adjust to a new way of life and to not being able to do things that you did before.  I wish I had a cure for all of us who are suffering every day.

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