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    exercise

    the doctor told us that my husband needs to move about and not just sit and do nothing. each morning i try to get him out and walking but more often than not he is too tired. i have told him he needs to use it or lose it or he will end up like grandpa simpson sitting looking out the viewing room. i have tried putting music on and getting him to lift arm weights but unless i push him he isnt too keen. am i being cruel or kind?

    #2
    You’re being very sensible Denise.

    As I understand it, moderate exercise is good for us. It keeps the remaining muscles operational for as long as possible.

    The very limited standing and walking I do is all my legs can manage, but I do daily exercises for my arms and shoulders. It helps things like blood circulation and digestion. It also gives you an indication of progression.

    Sitting still for too long is not good for us. It’s just one of the dilemmas we face.

    Good luck!

    Doug

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      #3
      Speaking from my couch I have to say that trips to the fridge and toilet are enough exercise. It's not like I'm going to get fat is it? 😄x

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        #4
        Thank you Doug I can now tell him that my reasoning has your support. Matthew that really helps I'm not going to tell him about your latest concoction that can wait for pancake day at least. Anyone wants to second Doug I will be very pleased.

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          #5
          Hi Denise,

          I totally agree with Doug and even when sitting there are exercises one can do. Check out the pedal exerciser or arm exercise.

          https://www.completecareshop.co.uk/physiotherapy-aids/exercise-machines-and-equipment/shoulder-pulley-exerciser-view-large
          https://www.completecareshop.co.uk/t...saAnoYEALw_wcB
          I’m going to do this even if it kills me!

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            #6
            Denise

            I have something like this that you are very welcome to. I will try to PM you a photo.

            Otherwise PM me an email address.

            Where abouts are you?

            Doug

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              #7
              Hi Denise,

              It's a tough one. If someone tried to get me to do something that would tire me, I'd give them the Evil Eye (I'm very good at it 😂) but I wouldn't be doing myself any favours as my joints would seize up and cause pain.

              It's not so much the 'use it or lose it' aspect - if that's all it took, we'd all be mobile and dexterous - but it is good to keep joints moving and muscles as supple as possible. If Stephen even got his limbs moved daily, that's a good start. It's called Range of Motion (ROM) and I have it done throughout the day. If he then wants to do more exercise, great.

              The fatigue we often have can be really all encompassing, so don't presume he is pulling a sickie!!

              Finally Denise, you're doing great, Stephen is one lucky man to have you.

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

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                #8
                We've been advised particularly for the arms, to do some aided excercise., So that the muscles don't seize up or shorten, meaning that everyday movement (especially dressing and drying after a shower) isn't too painful. Walking to the toilet or from bedroom to another room is the max he can do walking wise now and that's getting wobbly, so got to focus on what we've still got let.

                Im finding I start sweating more than him when assisting haha (as not much movement left in his arms now, so it's a wee heart raising activity for both parties).

                We use 3 assisted movements which are difficult to describe but I'll try: slow punch to the air, a lateral lift (like funky chicken, exposing arm pit) and elbow rotation move (like demonstrating how a door opens). So we do 10 of each excercise and switch arm..... and then a second round. Finding the first round to be fairly stiff and by the second round we could be arm wrestling haha.

                Thank goodness for furlough to have the time to do this, realistically we do every second night, but I did notice when we took 3 nights off last week (as we both forgot) he was much more sore doing the daily change/under arm towel drying.

                I'm no physio but I would focus less on lifting weights and more on keeping general movement as it's definately helped. And I guess with assisted movement the argument would be he doesn't have to do to much at all, apart from telling you if it's painful of course- we wouldn't want to cause that!

                Tess x

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                  #9
                  well thank you everyone for you help and support. just need to pin him to the chair and get him to read what you all have to say. i also think tess is right and those helping need to ne pretty fit too. thanks doug for the offer but like you say i am far away and to be honest he would give it a go and say 'well i dont feel any different' not that i was expecting different just help with his mobility. yes ellie i know the evil eye but its usually me giving it when i say come on we need to move and go for a walk at least. he doesnt do the evil eye just looks away like if he doesnt meet my gaze he isnt actually there! i know he suffers fatige and it seems to come in waves. a few days of being very tired and then he seems to recharge a bit. its been very hot here again 35+ and its knocking us all for 6. stephen suffers rather a lot and it makes me very grumpy. its when i am tryiing to lift shopping bags and put them in the car and he stands there. i sort of get annoyed that he cant help. he can use his hands with difficulty and i know it but just sometimes...........! i just wish he would like to try and help himself. he used to play football, weight train, take the local kids for football training and manage a team but now he would happily sit on a chair. i tried to get him to empty the dishwasher even if its one item at a time its something. i shall get the cattle prod out and have another go. i have an idea we could dance to black lace singing agadoo on the balcony!

                  Comment


                    #10
                    This is great information. That we have wanted to know.

                    It looks like Thomas and I will be doing the Funky Chicken as elbow high is about how high the arms go. I thought about the peddle thing Doug
                    but would postage not be a lot.

                    Thomas has good leg strength but his balance is iffy. You lot have answered a lot of questions we have had. The OT and physio are very risk averse. Would have him in a wheelchair and using a urinal. They suggested him peeing sitting down to which he said, as long as I can stand I WILL PEE STANDING UP. We have been told "We are very practical".


                    We have a walking stick from a friend and a rollator thing from another. The issue is space (we hope to move soon) and fear of falling, going in a straight line is ok.

                    ps we have just done the funky chicken, to much laughing. Thomas said it is like dad dancing. We will continue but probably to Led Zeplin or AC/DC.
                    No 80s disco allowed apparently.

                    We will just wave our hands in the air, like we just don't care.

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                      #11
                      Hi Denise,

                      I had to smile when you mentioned Stephen emptying the dishwasher. That was my task until I dropped a pile of dishes so unless you want to replace your tableware I suggest you find a different task.

                      Keep smiling.
                      Barry
                      I’m going to do this even if it kills me!

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                        #12
                        Ha I'm thinking plastic tableware in case he trys the dropping plates stunt. We've done a walk this morning though it's hot already. So funky chicken and black lace singing a agadoo (No idea what that means!) Perhaps we should have a weekly music suggestion and all get out and dance. ☺

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                          #13
                          Hi Denise and Barry,

                          Thomas helped with the dishes till he dropped a dish
                          It smashed into smithireens

                          So his job is juggling the remote at the moment

                          Happy to join the weekly group Funky Chicken

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                            #14
                            Originally posted by DeeH View Post
                            Thomas helped with the dishes till he dropped a dish
                            It smashed into smithireens
                            Oh Donna, he did that on purpose don't you know - no more emptying the dishwasher chore 😂😂
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                            Comment


                              #15
                              It can be a good laugh sometimes and when he can't really be all that bothered, I just do the assisted excercises while he watches the football whilst checking his face for pain of course

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