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    #16
    Rebecca, curve ball here - could his less-than-ideal breathing be triggering anxiety, causing even greater difficuly breathing?

    Did you get a finger tip monitor?

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

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      #17
      Hi Rebecca,

      You must both be so exhausted and stressed by this. I really hope hubby is more settled today and you both get a rest. I know its so frightening for a partner but I understand his reluctance go to hospital as hospitals especially A and E departments are not always geared up for MND people.

      Just a thought of mine and I really don't want to alarm you more than you already are. I developed sudden breathing problems and chest pains about 18 months ago. I thought it was my MND developing but my husband rang the GP who insisted we went straight to hospital. I tried to refuse but noone would have it.. Good job I couldn't run away ! It followed a period of me being in bed following a fall. The Gp had rung ahead ( she's a star !) and they were waiting for me with a blood thinning injection. Tests showed a blood clot on my lung which is relatively easy to treat but potentially dangerous.

      Its worth getting things checked out but I understand his feelings. Its so hard for a partner to take control as you want to respect his wishes ( my argument which fell on very deaf ears !) and we're not medical experts.

      Big hugs to you both,
      Love Debbie x

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        #18
        Hi Bexxy
        I suppose agreeing to go to the hospital alleviated the worry which in turn helped his breathing. Just relaxing can work wonders.
        Denise xx

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          #19
          i know my answer sounded a bit odd but ive had terrible ansthma attacks and i have used my inhaler over and over and not made much inpact. so made myself a cup of strong coffee and sat down with a book. believe it or not it worked. another time my nose would not stop bleeding. so decided to go to accident and emergency. before we got there it had stopped. it had been bleeding for ages. all i can say is it worked and i can only think it was because i stopped worrying. i dont recommend everyone uses this as i felt sure calling an ambulance was the best suggestion.

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            #20
            Thanks all for your replies.

            My husband has continued to be ill and needs my care 24/7. We have had another phone appointment with GP where he refused to visit. Eventually called 999 at 1.30 this morning. Three paramedics came an hour and a half later. They were here for an hour and said they could see no signs of infection and didn’t feel there was anything that A&E could do. They apologised that they couldn’t offer any treatment and off they went.

            The good thing is they listened to his lungs and said they sounded clear and checked his stats. Slightly high blood pressure but nothing major. So it ought to be reassuring but it doesn’t feel it. The impression they gave is that this is probably just progression of mnd and nothing can be done. They said it sounds like mucus high up in his airway.

            so on it goes. This is what we are meant to accept now. We are both utterly exhausted. My husband isn’t sleeping for nights on end.

            The last time we were seen at the MND clinic (royal London) was last November. My husband walked in the door and drove back to work on the building site after. He now hasn’t worked for 10 months or walked for 8 months so that is a very long time ago in terms of his illness.

            I just don’t understand how someone can feel so ill and suffer like this and receive no medical attention. All of his medical care is down to me, google and this forum! Hardly sufficient. Surely we should have a nurse coming round to check on him?

            I don’t know how we can both carry on like this if he doesn’t get any better. At least before the paramedics came we had some hope that it was something like an infection that could be treated. Now I feel devoid of hope. A familiar feeling with this terrible illness.

            I feel like nobody cares about him but me. They just sent him home to die and don’t want to hear about it.
            Last edited by Bexxy; 25 October 2020, 13:41.

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              #21
              OK Rebecca, you can't go on feeling so isolated and worried when there are specialised services available for people with an MND.

              First thing tomorrow phone the Royal London MND Clinic, given your husband is under their care, and get an appointment, by video if necessary, to discuss his respiratory function as well as his general progression. It is not acceptable to have no Clinic input for almost 12 months. Contact details: https://www.mndassociation.org/suppo...ts-and-london/

              Or, if you'd rather phone the MND Connect helpline, do that.

              His GP is obviously useless, so he should be linked into the local hospice for palliative care - I am not saying he is at end of life stage, these nurses have specialised knowledge in dealing with people with life-limiting conditions. If he needs meds to relax/sleep, they can guide you both through the pros and cons of each medicine.

              I am so sorry you feel so alone.

              Big hug to you.

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

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                #22
                Bexxy

                I think you and me are pretty much in the same boat, looks like a trip to nowhere though eh?

                The word abandoned keeps coming to mind,

                Sue

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                  #23
                  Thanks Ellie. I would feel much more alone if it weren’t for you and this forum. I just feel so bad for him. Yeah I think the local hospice is our best hope of help. I am going to find someone to do a referral tomorrow, possibly MND coordinator at royal London as that will be two birds with one stone.

                  in the meantime, I have upped my game on the mucus attack! Doing nebuliser every 1.5hrs followed by cough assist with ventilator rest of time and also plenty of fluids. We have had a fair bit of greenish mucus up already today which is good. Hopefully this will have an impact by bedtime. I am also trying to buy a riser recliner on eBay to go in the bedroom so if he needs to sleep in the chair I can still be in bed. I think he has only managed one full night in bed in two weeks even though it’s an electric profiling bed.

                  the question is why he has so much mucus if he doesn’t have an infection. Is this normal?

                  does anyone use a suction machine? Should I try and get one?

                  thanks

                  rebecca

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                    #24
                    Sue

                    I’m sorry you are in this sinking ship too!

                    I think the overriding feature of MND is hopelessness which I find very hard to deal with as I do not give in or accept defeat easily.

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                      #25
                      I have been given a suction machine, and it works great, it's just a little large for everyday use. Unless you're not moving obviously. 😄x

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                        #26
                        Hi Matthew

                        Is it easy to use? Does it not make you gag? And does it get the mucus from quite far down? Who/where did you get it?

                        thanks

                        Rebecca

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                          #27
                          Originally posted by Bexxy View Post
                          the question is why he has so much mucus if he doesn’t have an infection. Is this normal?
                          It's a 'new normal' so to speak! You're doing great in trying to keep his airways clear of thick, sticky mucus - extra nebs & fluid should make a difference. There is probably a normal amount of mucus being produced, but A) it isn't being swallowed normally and/or B) it's thick because it isn't being diluted by normal amounts of saliva and/or water.

                          Even tiny amounts of food in the airways can make mucus green.

                          Originally posted by Bexxy View Post
                          does anyone use a suction machine? Should I try and get one?
                          I have a feeling that depends where you live - Nurse, OT, Physio, Hospice, Clinic or sometimes nobody 😣

                          Keep up the good work.

                          One thing - can you remember what his Sats figure was?

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

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                            #28
                            Thanks Ellie. Good to know. It’s not knowing what to expect and what to accept that is so hard. I will have a list of people to get on to tomorrow. I frequently make in excess of 20 calls every day of the week just chasing things up for him. His oxygen saturation level was around 95

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                              #29
                              I got mine from my community nurses and it can go as far as you'd want it. It's the same as dentists use. x

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                                #30
                                Hi Bexy, I see that you’ve had lots of advice today which is good, but nobody has commented on allergies. Was it a joke about the hamster in the room? If not then move it or any other animals out of the rooms that your husband uses and vacuum every surface well. I used to feel my chest irritated when our cat was in the room. It went missing eighteen months ago and I’ve had no such issue since. Good luck for a quick solution, Lynne x
                                ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                                I'm staying positive and taking each day as it comes.

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