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    Fun and games

    My hubby and I have been left to our own devices after having the manual hoist delivered and OT round to show us what to do. My cough assist was delivered and a lesson on how to use it, though the lesson wasn’t a great success. Today we have given both a go without any success. For the hoist can’t remember which strap goes where, the cough assist I can’t work out when to cough when I am breathing in and out and I can’t hear the beep over the noise of the machine. We have given up !!! Is it just us or do others have issues with these items.
    I think I need to sit in the garden now.

    #2
    Madge I'm sure you're not the only persone to have brain freeze when it comes to using equipment for the first time Madge 🥴

    There are lots of helpful videos on YouTube, so you might find one on your particular hoist.

    I know there are videos on using a cough assist machine, which I could post for you and see if it refreshes what you were told, or perhaps you'd prefer to have another in-person demonstration (of both), so don't feel awkward getting the relevant people back.

    Enjoy your garden 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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      #3
      Thanks Ellie I didn’t think to look on YouTube. If you have any info you can post that would be helpful. Thank you.

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        #4
        This is the cough assist video Madge - it's just under 10mins long and, if you want to skip to the part where you see it being used on a person, start at 5m 20 (the first bit is about the machine itself)



        If you can't find one for the hoist, let us know which one you have and perhaps one of us have the same one. 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 Madge,

          We had exactly the same problem as there is quite a lot to remember. As Ellie has said have a look for a YouTube video for your particular hoist, there are plenty out there by each manufacturer.

          I wish they would leave an instruction sheet for this sort of thing 😠

          James x
          Foxes Never Quit 💙

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            #6
            This is totally understandable Madge . I find when I am given a new piece of equipment I am stressy about needing it so i don't concentrate.

            We were provided with a mobile hoist and training a year ago. I have no movement in my legs so once my arms started to weaken it was agreed we should have it for when its needed. I am still transferring sideways but only just. They serviced the hoist this week and we had totally forgotten what went where. My OT agreed we'd need a refresher course and said she'd come out until me and my husband felt confident. I wouldn't worry about getting people backX😘

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              #7
              It’s encouraging that it’s not just my hubby and me x I find it hard concentrating and learning new gadgets these days … hey ho

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                #8
                Originally posted by Lcfcno1fan View Post
                I wish they would leave an instruction sheet for this sort of thing
                You'll probably find user manuals for most bits of kit on t'interweb - it won't shock you to know that I've a dedicated folder on my PC for mine 😉🥱😘
                ​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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                  #9
                  Originally posted by Ellie View Post

                  You'll probably find user manuals for most bits of kit on t'interweb - it won't shock you to know that I've a dedicated folder on my PC for mine 😉🥱😘
                  No it doesn’t surprise me Ellie 😂😂😂😂😂

                  To be fair you can get hold of instructions online but I really wish that the likes of Medequip would give users a simple quick start guide or something similar. There are quite a lot of people who don’t have Internet access and struggle to find this sort of stuff 👍
                  Foxes Never Quit 💙

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                    #10
                    I have spoken to OT and she said she will pop out to see us on Friday x thank you all for your advice x

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                      #11
                      How are you getting on with the Cough Assist machine Madge?
                      ​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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                        #12
                        I’m not Ellie x they are coming back to see me. I feel claustrophobic with the mask on, I can’t hear the bleep for when you have to cough as the machine is noisy hence I’m coughing at the wrong time !! No hope for me 😵‍💫

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                          #13
                          Hi Madge! I’ve deffo had problems with many items offered - notably the NIV! (New mask delivered courtesy of nhs -result!). However, one issue with the hoist that they never tell you about is that the sling is as , if not MORE important. My OT brought several for me to try and spent ages lengthening/shortening various straps. I must have tried at least 10 models on (not that I’m fussy!) until we found a good one. It’s exhausting trying them on so don’t worry if you can’t find one at the first go. My secret is nagging!!!
                          good luck! X

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                            #14
                            Hi Ellie an update re the cough assist. The ladies came today and I got the hang of it. I still need to practice but it was so much better today so hopefully I will get a bit more used to it x. Just another piece of equipment to clutter up my home 😝

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                              #15
                              Madge Oh that is good news Madge 👍👍

                              You're right - practice will make things easier and yes, another bit of clutter 🙄 The Queen of Decluttering, Marie Kondo, would hate to see our rooms, wouldn't she 😄😘
                              ​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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