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    Hi all

    my husband has been really struggling to breathe for a week. We thought it was a chest infection but he’s had a full course of antibiotics and they made no difference. He is using a saline nebuliser, cough assist, NIV, room humidifier and carbocisteine.

    he managed to sleep in bed last night for the first time in a few days and he sounded quite clear chested when he came downstairs this morning but within half an hour sounded awful again.

    He is coughing and sounds like he’s growling with every breath in. Because his breathing sounded clear when he came downstairs and soon deteriorated we are wondering if it could be something in the room causing it, such as the hamster. Or is it just the movement of the mucus? Or something else?

    I have asked the gp to come out but they won’t. I have also asked the respiratory physio to do a home visit but they won’t either. It seems the only option is 999 but my husband may never talk to me again if I do that. I keep asking him but he refuses.

    does anyone have a similar experience? Will this improve? Is there anything else I can do?

    thank you


    Good afternoon, (well it is just)

    I have just been commiserating with somebody on MND Warriors who has got a bacterial infection following the fitting of breathing tube and that bacteria isn't responding to antibiotics because it is resistant. So if your husband does have a drug-resistant bacterial infection I would have thought a whizz into hospital was the best bet?

    If indeed it is antibiotic resistant or viral then a week is quite long enough for me to be very worried.

    Do you have the facility to check his oxygen saturation – one of those little tools you put over your finger to see what "blood ox" looks like?


    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

    "Things turn out the best for people who make the best of the way things turn out"


      Well he has no other symptoms of an infection such as high temperature so I’m not sure. He is refusing my request of getting the ambulance out. We did have an overnight oxygen test last night so I guess that will flag something if it is of concern- will call physio to ask.


        Do you have a palliative care team nurse that you can contact for advise?


          Rebecca, are you saying nobody has listened to his chest (with a stethoscope)? A man with MND was prescribed antibiotics without being seen? If that's what happened, it beggars belief really 😡😡 A chest infection *must* be ruled out, Covid or no Covid...

          When he 'growls', does he feel it's phlegm/throat, not his chest? Is the Cough Assist making any difference? Is he coughing up stuff? If he can't cough up what the machine is dislodging, he needs a suction device. Yes, allergens could be the culprit.

          If he's linked into the hospice, contact them and tell them you've been left high and dry.

          Good luck.

          Love Ellie.
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


            Hi Bexxy,

            I cant comment on the actual problem as I am not in that situation yet, but back in the summer my husband just couldn't get out of bed no matter what I tried, to help him with and Care link only come if he falls,

            So as his carer I took the decision to ring the ambulance, how guilty I felt for that as it was not a medical emergency, they came and stayed for about an hour and told us both that we should "phone 999 whenever we need to as that's what they are there for"

            they also said NOT to ring 111 as that just puts you to the back of the queue, so after that neither of us felt guilty and I shall do it again if I have to.

            Blokes are stubborn for some reason - I wont hesitate in the future and my husband now agrees with that decision.

            Husband Albert diagnosed PMA Feb 21


              Battle of the sexes is officially started 😆x
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


                We don’t have a nurse sadly, that would be very helpful. If we have any problems I have to try and work out who to contact and none of it is linked up. It’s a full time job!

                yes precisely that Ellie. I have asked and asked them to come and listen to his chest. I’ll take anyone with a stethoscope- a vet will do!

                he says he feels like it’s fluid in his lungs. He is coughing up some mucus 2 or 3 times a day but the growling doesn’t stop when he coughs something up, which it has previously. Hard to say if cough assist is helping. He doesn’t really feel it is but maybe a while after he uses it he is more likely to cough something up, it just doesn’t feel like it’s doing anything at the time. The nebuliser is what he says feels most helpful but nothing is clearing that rattling/growling noise.

                Yes Sue, I think I will just have to make an executive decision 😞

                Thanks all


                  Rebecca, it's time to be demanding!! No ifs, no buts, his chest must be listened to and oxygen Sats known.

                  If the GP won't come to the aid of an MND patient, I'd be tempted to ring an ambulance and have the paramedics examine him (then suffer hubby's wrath) Hopefully it's just stubborn throat phlegm which can be thinned with pineapple juice, lots of water and maybe more Carbocisteine..

                  Big hug,
                  Ellie x
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


                    Yes hopefully. He has a glass of pineapple juice every morning and has done for months. I don’t know if it’s better used as and when rather than routinely. He has started the carbocisteine and has been drinking lots of water.

                    is it worth getting a oximeter from the pharmacy? If his oxygen levels are ok does this mean it’s nothing to worry about?



                      Originally posted by Bexxy View Post
                      I don’t know if it’s better used as and when rather than routinely.
                      Pineapple juice, use routinely. Maybo Carbo dose can be increased?

                      Originally posted by Bexxy View Post
                      is it worth getting a oximeter from the pharmacy?
                      Yes, it's worth having a pulse oximeter, especially for those of us on NIV/have compromised breathing.

                      Originally posted by Bexxy View Post
                      If his oxygen levels are ok does this mean it’s nothing to worry about?
                      Not necessarily, but sustaining consisent normal O2 levels is a good sign.
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


                        If you don't call in paramedics and something horrible happens you won't forgive yourself.
                        if you leave it too long and it gets a lot worse then he will end up in hospital anyway.
                        Denise xx
                        when i can think of something profound i will update this.


                          Exactly my thinking Denise. He finally conceded to calling them and then he went from very ill and really struggling to totally fine 20 minutes later. This makes no sense! In the same place and no medicine etc. How can he go from seeming at deaths door to almost fine?


                            Originally posted by Bexxy View Post
                            He finally conceded to calling them
                            Does that mean he was checked out and lungs and Sats were OK?

                            If they were and his breathing difficulty was transient, it could have been a mucus plug obstructing his airways. But he does need to be followed up by his GP and Respiratory team - when are you expecting his overnight Sats results?

                            Love Ellie.

                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


                              No he hasn’t been checked.

                              Basically last night his breathing was really bad and I was getting seriously hacked off with him for putting us all in that situation and refusing the only help available. He conceded that if he didn’t manage the night in his bed we would call the ambulance.

                              So he got me up at 1.30am to come downstairs because he couldn’t get to sleep in the bed. We agreed that we would wait for kids to leave for school then call ambulance.

                              He managed to sleep in his chair with me on the sofa. Then around 7.30am he was really bad where we were concerned about the children even seeing how ill he was but he didn’t want me to phone the ambulance until they were gone.

                              Then low and behold, 7.50am he felt fine and breathing sounded normal. He hadn’t coughed anything up, taken any medication, changed room or position. It just makes no sense.

                              Over the course of the last week he has been up and down, randomly getting better and worse. Really can’t work it out.