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    The thing that has struck me about living with MND is the lack of a guide to the practical aspects of care. I realise that the forum is very useful in this respect, but you would think that after decades of people living with the condition there would be a standard way of dealing with most of the symptoms or obstacles we come across. As an example, I'm sure that if I paid an occupational therapist to spend a day watching me and Louise doing various care related tasks, they would be able to give us loads of useful tips on how to do them, but instead we are all left to reinvent the wheel so to speak. We are all just winging it.
    Each day is made easier with a bit of humour.

    #2
    We don't count compared to Cancer. Nobody does. 😠
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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      #3
      This is so true Gary, in some aspects, we have received copious amounts of support from our neurology team , but I asked today if my wife could get some instruction on lifting me up off the floor after I fall, and was told no. Apparently she is to ring 999. What a waste of emergency services time.
      Diagnosed 2nd Jan 2020
      Both arms/shoulders affected, left worse than right.
      Progressive Muscular Atrophy suspected

      Comment


        #4
        Originally posted by Beemer View Post
        This is so true Gary, in some aspects, we have received copious amounts of support from our neurology team , but I asked today if my wife could get some instruction on lifting me up off the floor after I fall, and was told no. Apparently she is to ring 999. What a waste of emergency services time.
        Yes, that's the standard advice. It's too risky for one person to lift another. Also, the emergency services will check the person who has fallen is okay.
        Each day is made easier with a bit of humour.

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          #5
          Originally posted by GaryM View Post

          Yes, that's the standard advice. It's too risky for one person to lift another. Also, the emergency services will check the person who has fallen is okay.
          After my last fall, where I faceplanted the drive, the Paramedic lifted me by holding onto my wrists with his arms under mine, I thought at one point both shoulders was going to dislocate, it was so painful. With no muscle strength in the shoulders , there is very little holding the arms in
          Diagnosed 2nd Jan 2020
          Both arms/shoulders affected, left worse than right.
          Progressive Muscular Atrophy suspected

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            #6
            A How To guide for MND... Gary, if only such a tome existed 😏

            I guess the basics could be written down/demonstrated/taught and OTs should definitely ensure that both carer and the person with MND not only know how to use any equipment supplied, but also to see the pair/trio in action and be able to say stuff like, No, it's better to put your foot here because A) it won't be digging into the kneepad and B) your weight will be more balanced.

            I have written my own comprehensive guide for my carers and for when I go into respite *but* I doubt it'd be spot on for other people, as it's so specific to my own needs and abilities. For example, on dressing me, I have my right arm put into the sleeve first as my left arm has a greater range of motion, so can be lifted higher, goes back more, making it easier to put into the 2nd/tighter sleeve of my top. But I've also more generic tips, such as to help a carer dress me in any button up shirts/tops/cardigan, keep the shirt low on the body, don't pull the first sleeve up past the elbow, drop both arms by your side, slip the 2nd arm into sleeve before bringing the shirt up onto shoulders - it's at a fundamental level but it works.

            My manual, which has instructions on everything from setting up my food pump to brushing my teeth, is updated every time I either think of how a task could be improved or simplified, and when my progression forces a change.

            And I am not looking for a gold star!! If a guide existed, I would have taken the easy option and not spent countless hours typing mind-numbing step by step instructions... x
            ​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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              #7
              Originally posted by Ellie View Post
              A How To guide for MND... Gary, if only such a tome existed 😏


              My manual, which has instructions on everything from setting up my food pump to brushing my teeth, is updated every time I either think of how a task could be improved or simplified, and when my progression forces a change.

              And I am not looking for a gold star!! If a guide existed, I would have taken the easy option and not spent countless hours typing mind-numbing step by step instructions... x
              I still think your manual would be worth a read @ Ellie. Like you say though, progression forces change.
              Diagnosed 2nd Jan 2020
              Both arms/shoulders affected, left worse than right.
              Progressive Muscular Atrophy suspected

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                #8
                Well Gary... that is exactly what my care app is about! Precise instruction on how much whisky goes into the mid-afternoon brew makes my life bearable again. I suppose the app could also be used to set up a nippy. Graham1.0 goes from strength to strength!
                Copyright Graham

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                  #9
                  You are all getting more than us. We have nothing. Told to move house because our house and location are not not near services.

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                    #10
                    Originally posted by Beemer View Post
                    This is so true Gary, in some aspects, we have received copious amounts of support from our neurology team , but I asked today if my wife could get some instruction on lifting me up off the floor after I fall, and was told no. Apparently she is to ring 999. What a waste of emergency services time.
                    About getting you up off the floor. There’s inflatable cushions that your local services ought be able to supply. I have no experience of these. My OT got me a chair type lifting device. It’s called a Raizer by Liftup and is amazing: gets built under me and then a remote control handled by my husband lifts the thing up with me on it into a sitting position. My neck has to be supported. But there’s only this one in our area so don’t know if it’s available to all of you. Maybe it’s cost would be prohibitive. Lynne x
                    Last edited by Lynne K; 15 April 2021, 08:00.
                    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                    I'm staying positive and taking each day as it comes.

                    Comment


                      #11
                      Originally posted by Lynne K View Post

                      About getting you up off the floor. There’s inflatable cushions that your local services ought be able to supply. I have no experience of these. My OT got me a chair type lifting device. It’s called a Raizer by Liftup and is amazing: gets built under me and then a remote control handled by my husband lifts the thing up with me on it into a sitting position. My neck has to be supported. But there’s only this one in our area so don’t know if it’s available to all of you. Maybe it’s cost would be prohibitive. Lynne x
                      I am aware of the lifting cushions, as I used to manage O.T. equipment at Sheffield Hallam University, so I am also aware of their cost . I think they may only carry one out to a person to lift them up, but not loan out. I am rather hoping that I don't fall that many times that I need one at home.
                      Diagnosed 2nd Jan 2020
                      Both arms/shoulders affected, left worse than right.
                      Progressive Muscular Atrophy suspected

                      Comment


                        #12
                        Originally posted by Beemer View Post

                        I am aware of the lifting cushions, as I used to manage O.T. equipment at Sheffield Hallam University, so I am also aware of their cost . I think they may only carry one out to a person to lift them up, but not loan out. I am rather hoping that I don't fall that many times that I need one at home.
                        When the Raiser chair was delivered here by the local services store guy he said that he’d never seen one before. So I suspected that it had been purchased by the previous owner and kindly donated to local services when it couldn’t be used any longer. My OT told me about it before it had been donated and reserved it for me as soon as she was able. I’m a very lucky lady and my husband is delighted with it because we’d previously had a seriously hard job to get me up. Lynne
                        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                        I'm staying positive and taking each day as it comes.

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                          #13
                          Ellie I could have done with instructions on how to put a long sleeved t-shirt on Stephen. He can't lift his arms up so we sort of wrestled with it until I said 'no good looks like we'll have to break your arms '. So now he has his arms just lifted in front
                          arms in first then loop it over his head. It's thinking about removing trousers and pants so he doesn't have to get up and down. It's like planning a military manoeuvre. 🤔

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                            #14
                            Originally posted by denise View Post
                            So now he has his arms just lifted in front arms in first then loop it over his head.
                            A great example Denise of why a standard set of instructions doesn't work. I can't do it that way as it hurts my weak neck, nor do my arms have that range of movement, so I need an arm in a sleeve, then head through, then the other arm 😏

                            What are the chances of getting him into a standing hoist just for the ease of pulling his bottoms up and down?? He wouldn't need to use it any other time.

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

                            Comment


                              #15
                              Ellie I have no equipment. Just his breathing thing and his feed. No physio no speech therapy nothing. I asked for a wheel chair and shower chair but that was weeks ago. 😭

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