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    Cough Assist

    Hi all, question how bad do you have to be , to get a cough assist, set up a appointment at Papworth as I’ve been struggling to cough properly, I was told at the appointment that I should only worry if I’m turning blue! And there was no mention of my health complaint in the letter about the whole appointment and tests. Should I be concerned???

    #2
    Originally posted by Dougee View Post
    ... there was no mention of my health complaint in the letter about the whole appointment and tests.
    Can you elaborate a bit Dougee - do you mean they didn't seem to be aware that you have an MND?

    What tests were done on you during the appointment?

    It's not about "turning blue" with MND, it's more about having a cough which is too weak and ineffective to be able to clear your airways of secretions on a *daily* basis so you *don't get* a mucus plug which may make you go blue, nor a chest infection/pneumonia caused by bacteria and foreign bodies in your lungs - is it then they want you to make another appointment to get a Cough Assist?? 🤯🤯 There's a fair chance that would be too late...

    Can you cough up your secretions? Do they cause you trouble?

    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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      #3
      Hi Ellie, I phoned them a couple of weeks ago, explained that I’m struggling to cough up mucus, they arranged a appointment within hours, and when I arrived I had all the usual tests, blood oxygen, respiratory tests, weight etc etc, the lead guy then sat down with and went over everything I’m going through, co2 ok oxygen ok , all the usual questions I made my point about the difficulty coughing, I struggle in the night, No appointment for cough assist just said I should only worry if I go blue.

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        #4
        It's such a shame that your concerns weren't addressed Dougee, would you try contacting them again and reiterating your concerns? As I said, a Cough Assist is used as a prophylactic, rather than a firefighting device after a crisis. It's also better to start treatment before the cough gets too weak.

        They are expensive machines however and there' can be the usual (despicable) postcode lottery in obtaining one...

        Sometimes they'll first offer a cheap as chips 'LVR Bag', a type of basic manual cough assist - don't suppose that was mentioned? They can be pretty good. I use one myself as, thankfully, my cough can still move secretions. xx
        ​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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          #5
          Hi Dougee, my husband uses a cough assist at home - we told our MND nurse when he was really beginning to struggle with getting mucus up and she organised the respiratory team to contact us. A physiotherapist brought one out and showed us how to use it.

          Hubby gets exhausted coughing and I don't think we would manage without it now, especially in the evening when he is tired. He has days when he coughs a lot throughout the day and other days when it is mostly morning and evening and sometimes only morning; it's as though the movement of getting up/dressed shifts mucus around so he then starts coughing. Sometimes previously during his coughing fits he was working so hard to cough that he ended up gasping and struggling to catch his breath again - our nurse suggested taking lorazapam to help at this point. But since using the cough assist this doesn't really happen.

          He also uses a saline nebuliser to help in the morning and takes carbocistiene.

          I've read of other people on these forums who have had cough assist machines at home so it's hardly an unknown request. If your muscles aren't strong enough for you to cough effectively, then you need it now as an intervention, not be expected to wait for some crisis to occur. I would go back to them again - that mention of only worrying if you turn blue (!!!) makes me wonder if that person knows what MND is - i.e., do they know the problem is muscular not lung function?...

          Hope you get it sorted xx

          Husband diagnosed October 2020 with ALS. Started with foot-drop and weak grip/visible wasting in right hand. NIV and powerchair user.

          Comment


            #6
            I've been wanting to ask this but not wanting to...

            If a person can no longer cough, what happens to the secretions/mucus?... Does a cough assist still help at this point?
            Presumably a suction machine only removes the stuff that is actually in the mouth?...

            Husband diagnosed October 2020 with ALS. Started with foot-drop and weak grip/visible wasting in right hand. NIV and powerchair user.

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              #7
              Ahhh thank you Ellie and Betty , I will get back to hospital, and see what they can do, and see what happens xx

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                #8
                My throat muscles are too weak for cough assist so I take Carbocisteine, lots! 😉😁🤗😍xx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                  #9
                  Originally posted by Betty May View Post
                  If a person can no longer cough, what happens to the secretions/mucus?... Does a cough assist still help at this point?
                  The purpose of a Cough Assist machine is to artificially replicate a cough to cough up phlegm and mucus from the respiratory tract and from the back of the throat when a person's own cough is too weak and ineffective to do so.

                  The looser the secretions are, the easier they are to shift, even with a Cough Assist machine, which is where good hydration and, if necessary, meds, pineapple juice and/or a saline nebuliser are used.

                  When the secretions are nice and thin, the Cough Assist machine brings them into the mouth where they can be suctioned and/or swallowed (usually suctioned) xx
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #10
                    Glad to see you're paying attention at the back 😁😉😘😍xx
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                      #11
                      I was given a cough assist machine last week but it feels set at too high a volume for my lungs. It tries to blow in more air than I can cope with and then sucks so much in the cough phase that it feels as though my brains are being sucked out through my nose. The physios said that it could be reset but is there a case for waiting to see if I can get used to it?

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                        #12
                        Originally posted by Rosemary6NT View Post
                        The physios said that it could be reset but is there a case for waiting to see if I can get used to it?
                        It can feel fairly brutal Rosemary but equally, the pressure settings can be lowered for a while to give you time to get used to the sensation, before using a 'proper' therapeutic setting.

                        If using the cough assist becomes a dreaded experience, you're less likely to use it at all or as warranted, which defeats the whole purpose of having one, so time and effort on the part of the prescriber, not just on the user, is needed to make it as easy as possible to get maximum benefit from the cough assist (or any piece of kit)

                        If it still feels so awful on Monday, have a chat with the physio. xx
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                        Comment


                          #13
                          Dougee Sent you a private message.
                          Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.

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