No announcement yet.


  • Filter
  • Time
  • Show
Clear All
new posts

    Hi Lynne

    No it wasn’t a joke so thanks for advice. It doesn’t seem to be the hamster as he has been fine plenty of the time and has also really struggled to breathe when upstairs where the hamster doesn’t go. But it was certainly a consideration.

    Matthew- a community nurse, now that sounds like a dream! I will ask anyone I can when I make my calls tomorrow. Thanks.

    my I have also noticed that since feeling like this my husband retches when he has strong flavoured medicine, like cough medicine. Proper retching that if he had eaten it would all be brought up. Anyone else experience this? Also in the same period his bowel movements have been loose and infrequent. Just throwing it all in here in case it’s connected!



      Cough medicine!! Has he been taking that lately - it can have a dramatic effect on mucus?

      If he has, which one?
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user


        He took it before we got the mucodyne as I read on here that guifenesen was helpful. He hasn’t been taking it for ages but tried it again today. The mucodyne made him retch so much we had to get the capsules instead. I mean, who decided rum was a good flavour for medicine?!


          Hello Bexxy, I'm so sorry to read about your husband's condition and total lack of help.
          ​​​​​​My hubby uses a ventilator and he takes Lorazepam, an anti anxiety med, before he goes to bed. That settles him for the night.
          He was prescribed Lorazepam for severe breathlessness and just got into the habit of taking it at night, something his GP agrees with.
          I would consider changing your GP, ours will come out whenever we ask, though usually a phone call does it.
          Sending a hug.


            I have a PEG so any medication is simple. 😊x
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


              Hello @Bexxy
              I have a Social Worker... she informed me that I should contact her for any concerns and liaises with my OT’s and nurses

              So sorry to hear all your exhaustive efforts... I have carers during the week which means my husband doesn’t get so exhausted

              i hope you get more support when you contact the MND team xxx
              I have the ability to cope with this and I can still be the best person I can be. This is my life - if I am happy others around me are happy too