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  • Speak up and let us know what topics are useful!

    Posted by Amanda on April 8, 2020 at 10:44 pm

    Obviously the past month has been filled with changes, something all pALS and loved ones have become familiar with since diagnoses. This is YOUR forum and we want to know what you want to discuss! If you are uncomfortable or shy about posting a topic just reach out to Dagmar or myself and we will be happy to do some research and post a topic. We want to make sure this forum remains a useful and positive experience for you!


    Amanda replied 2 years, 6 months ago 7 Members · 8 Replies
  • 8 Replies
  • Susan Kinkade

    April 29, 2021 at 2:00 pm

    How do ALS patients deal with constipation? I’ve had a feeding tube for six months and began having trouble with constipation. I do not take anything orally and make sure that  I stay hydrated using the feeding tube. Are there any suggestions out there?

    • Duane

      June 8, 2021 at 5:53 pm

      Perhaps Miralax would be of benefit to you.  And prune juice thinned with water.

  • Cindy

    April 29, 2021 at 3:50 pm

    I’ve just begun to get horrific bouts of pain. I’m into a 4 1/2 year diagnosis. It wakes me from a sound sleep during g the night. Muscle weakness is stressed early. Could use more info on pain.

  • Aloha Frank

    April 29, 2021 at 4:20 pm

    Hi Cindy. Sorry to hear about the terrible pain you are now experiencing. I am a year into my diagnosis and am progressing very quickly, having already lost use of both legs and all of my left side. I cannot speak and have a difficult time eating and swallowing. My right arm/hand barely function so I can type using the ‘hunt ‘n peck’ method, but I can tell that will soon be impossible, sad to say. So far the only pain I’ve experienced is with my neck and back. I’ve tried different types of pain relief medicine but they all cause constipation so I quit using them. I hope you can find lasting pain relief soon. Living in constant pain is not worth living as far as I’m concerned. As I’ve said many times before, I’d rather ‘leave the building’ sooner than later. It’s only going to get worse. God bless, young lady!

  • Cindy

    April 30, 2021 at 11:37 am

    Thanks FRANK. Sorry for your quick progression. I used to think slower was better. Now I’m not sure. I guess we each have our crosses to bear. Surely we’re doing our purgatory right here on earth.Take care. God speed. Cindy

  • Robert Harrigan

    June 8, 2021 at 5:37 pm

    I saw Cindy’s post from 4/29 on her horrible pain. My wife Lisa ,diagnosed 2 months ago , also has terrible pain. I am wondering if anyone has had any success with CBD/THC lotions or vaping marijuana for their pain relief ? Thanks much Rob H.

  • Carolyn Barry

    June 27, 2021 at 4:46 am

    Hi Amanda ~ I was wondering if I could post a topic asking if anyone has had experience with having a company install a stair glide in their home.  I have no idea what company is good, yet not overly expensive.  I’m not in need of it yet, but I know I should start getting estimates from several companies, before making a decision as to who to go with.  We have several turns and landings, as we live in a 3 level townhouse.  As a result it requires a custom stair glide, so we know it will be very expensive.  Any thoughts or experience, especially regarding the names of any companies that anyone has experience with, would be much appreciated.

    Thanks! Carolyn

    • Amanda

      October 8, 2021 at 8:25 am

      Carolyn, I think that would be a great post and others would like to learn about it too!

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