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    #31
    stephen had some putty stuff for hand exercises but we dont even know where it is now! he used to do exercises every night but now he has given up. to get him to go for a walk is hard work and as for doing the funky chicken - welll i might as well just go try lay an egg! sometimes i could just .... well i know he feels tired but i just want him to try and not just give up.
    another thing that i wanted to ask is if i am not careful he will do nothing. i help him with most things but feel sure he is able to do somethings for himself. like i know he can make tea and toast and he can roll himself a fag! there have been times when he wants me to do it and i say well at least try and then i will take over if you cant. this seems to work. its horrible to see him struggle but then again if he doesnt at least try then wont it go the same way as the exercises he will just give up. i feel cruel but then again i do a lot already and sometimes i think by not doing anything surely his brain is going to pack in not just the rest of his moving parts.
    another thing is when i have managed to get him out for a walk then he says well i feel better when i get going! what it takes out of me to actually get him to go for a walk i could honestly go for a lie down im worn out.

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      #32
      Hi Denise,

      Isn’t it strange how we all approach life with MND in different ways. For me I hate the loss of independence and it took me a long time before I felt comfortable asking for help but for some people they find it easy to sit back. You suggest Stephen is capable of doing some things so maybe you should not be so eager to do everything for him. If he can can make tea and toast then the moment he gets thirsty or hungry then this will spur him into action. I’m sorry if this sounds harsh and there will come a time when you have to take over but that may arrive early if he gives up trying.

      Best wishes,
      Barry
      I’m going to do this even if it kills me!

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        #33
        Thank you Barry. So next time I shall tell him make it or starve! Your choice buster!
        sometimes it's not even a nice ask, more like a demand. 😐

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          #34
          Originally posted by Kent R View Post
          Hi all, I'm starting to lose the grip of fingers and thumb, with everything small or delicate. My palms are still stronger, so to hold 'broom handle' thick things like cutlery still works.

          I am trying hand squeezers and a large rubber ball to exercise fingers. It helps but is really tiring and i can still feel my fingers curling into my palms when i don't want them too.

          Has anyone found single finger stretching exercises helpful to prolong strength, or is it just wasting time (and hope) that it could make a small difference and delay the inevitable.

          Any suggestions and experience is appreciated. Thanks,
          Kent


          Kent

          we had the putty and hand gripper thing.

          The hand physio said that only strengthens the curl

          You should do stuff to counter the curling fingers, like passive stretching.

          I don't know if this would work but using mini elastic bands between the fingers to stretch.

          Husband's fingers and arms are in permentant curl at rest, we are just trying to preserve the stretch, with passive stretching and the hand splints

          Told no amount of exercise will build muscle back up, it is about preserving range of motion

          Good luck

          Donna

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            #35
            DeeH Donna, if you don't mind me asking... what type of hand splints does Thomas have and does he wear them overnight?

            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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              #36
              Hi Ellie (how do I do) the Ellie - ok


              He got them from the hand physio

              They go from under the elbow to the tips of the fingers (BLue) NEURO TEC

              She adjusted them with a heat gun as left fingers more curled then right. The palm bit is slightly curled and the fingers and arms are strapped in with velcro

              He can't even sleep with a watch, so when he is watching TV

              Only had them for about 10 days and not used them every day

              Should use at least twice a day for about 45 minutes

              Still trying to time meds, meals and hand straps as he can't use his hands at all with them on

              Love

              Donna

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                #37
                DeeH 😉 You figured it out!

                Thanks for your quick reply Donna.

                Yes, they are very similar to mine, except mine end mid-forearm. I asked because mine are ancient and showing the effects of weekly washing! I was looking at options these last few days but I've been very happy with them, so I'll stick with the same type I think - they seem to be fairly standard issue.

                I wear mine every night in bed and find the stretch lasts well into the next day, but I can't move my arms, so they don't exactly interfere with anything. My physio, like Thomas's, also said it's best to start wearing them early on, before contraction really sets in and stretches are painful.

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

                Comment


                  #38
                  Thanks Donna. I appreciate the knowledge and advice.
                  K

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