Forum Replies Created

  • mary-kate-smith

    Member
    March 15, 2023 at 11:47 am in reply to: Removing phlegm-mucus from throat

    I use a suction machine that works well. I am also on a feeding tube.  Contact Norco or whoever is on your area and they can get you set up.  Really works great. Am eating right now. Will get the the model latet today.

  • mary-kate-smith

    Member
    November 22, 2022 at 5:15 pm in reply to: Preventative Care After Being Diagnosed With ALS

    I had a mammogram about a year ago. My chest ached for almost a month.  Never again. I do see my doctors for regular check ups. That is enough for me.

     

     

  • mary-kate-smith

    Member
    September 15, 2022 at 5:14 pm in reply to: Sleeping

    <p style=”text-align: left;”>I use a hospital bed. I can raise and lower it at the top and also at my knees. Electric so no need to do it yourself. I also have a slow ALS. Can’t speak or eat, have a feeding tube but other than that I good.</p>

  • mary-kate-smith

    Member
    September 15, 2022 at 5:14 pm in reply to: Sleeping

    I use a hospital bed. I can raise and lower it at the top and also at my knees. Electric so no need to do it yourself. I also have a slow ALS. Can’t speak or eat, have a feeding tube but other than that I good.

  • mary-kate-smith

    Member
    September 13, 2022 at 5:18 pm in reply to: Dressing up for hospitals or appointments

    I like to dress nicely also. Since I don’t go out alot this is a place where I can get dress up. Not like a night on the town but nice.

  • mary-kate-smith

    Member
    August 19, 2022 at 11:20 am in reply to: EXCESS MUCUS

    I also b had this issue. My doctor prescribed Glycopyrrolate and it helped. I also have ac suction machine that vIb used alot. For some reason I’m getting dryer and no longer need the Glycopyrrolate and only suck out twice a day now. I hope yours gets better.

  • mary-kate-smith

    Member
    July 9, 2022 at 8:42 pm in reply to: Would you seek out Albrioza treatment?

    I would definiitely seek out out.

  • My biggest adjustment has been to not being to talk or eat. I use my phone gorgeous speaking and have a feeding tube. I do miss drinking a big glass of water. Other than those 2 issues I am thankful that I can still do everything else. Completely take care of myself.

  • mary-kate-smith

    Member
    August 26, 2021 at 3:37 pm in reply to: No longer eating by mouth

    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.

     

     

  • mary-kate-smith

    Member
    August 20, 2021 at 10:21 am in reply to: No longer eating by mouth

    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.