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    Out of interest Can I ask …. does everyone do some sort of exercise everyday for cramp, muscle strength and stiffness etc ?
    will it make any difference to me or am I wasting my time trying or is it a mind over matter thing…. if I don’t try I will never know.

    Madge, it's good to keep the joints moving to stop them seizing up and causing pain.

    I do 'range of motion' exercises, or rather my carers do them on me, and also have used a floor pedal machine which is good for reducing muscle spasticity - some of these machines can be put on a table and also used for arms.

    Whatever you do, don't do it if it hurts or takes too long to recover from.

    Physiotherapists have given me guidance on what to do and what not to do so, if you have an upcoming Clinic appointment, it's a good question to ask the Physiotherapist. xx
    Last edited by Ellie; 31 May 2022, 18:59.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


      My neurologist recommended I continue to go for a walk everyday as I am still mobile but not to over do it or push myself too hard. And I have found its getting the balance right. Too much and I am shattered for days and my legs are more rigid. For upper arms I am useless. I try and use a baked beans can to lift arms up to side and above head etc but that makes them shake with effort. I think as Ellie said maintain muscle and joint movement where possible is positive to do. X
      Diagnosed June 2022. Confirmed MND. Limb onset. Symptoms started November 2020.


        Thank you ladies. What does confuse me is the physio from the hospital is not hands on. Am I expecting too much from them or is just being told what to do is enough and then I am left to my own devices.
        i can only exercise in my chair or bed so quite limited really.


          Originally posted by Madge View Post
          Am I expecting too much from them or is just being told what to do is enough and then I am left to my own devices.
          That's fairly typical of hospital and community physios Madge, just Show & Tell sessions really.

          I had actual physiotherapy sessions in the hospice, which were very good, and I still do some of the exercises now.

          Would you be interested in using a floor pedal machine? Not much leg function is needed to use one and they can be used whilst sat in an armchair watchint the telly 👍 Something like this:

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


            Hello Madge
            I’m still quite mobile but tend to overdo things, but I have found doing various leg and shoulder stretches throughout the day does help me continue to be ‘normalish’
            i haven’t seen hospital physio since October, they never seem to grasp the fact the nerve signal isn’t getting through and it ain’t going to suddenly start working. So I do some of exercises that work for me, no harm in doing gentle exercise and stretching those muscles you do have control over
            when I overdo it, I will have a rest day, or two , I’m still playing golf. Don’t walk the course any more, otherwise it’s 4-5 rest days.

            To answer your original question, works for me

            Hope you don’t mind Madge but as this is an exercise post I’m going to plug something just in case there are any golfers out there. I currently play with the Disabled Golf Association ​​​​​, we are a group with all types of disabilities, and hold golf events throughout the country, as far as I am aware I’m the only one with MND , but there are quite a few with MS, so if you can still stand and swing a club , drop me line
            As long as there’s golf and beer I’m happy


              Madge I have experienced the same with my physio. I've had nothing. She came out once last September for a meet and greet. Then nothing. I sent emails asking re a plan etc. And nothing!

              So I did nothing. Once I read others having excercise plans done I really felt fed up.

              I do more now re range of movement and stretching. Holding the stretch longer (20 seconds) especially my calves and shoulders. We googled excercise for mnd on YouTube and found a few good ones. I can't do many but my husband helps me with those.

              I circle wrists and ankles and sitting down leg stretches etc just keeping the joints oiled. I even do the odd excercise in the shower because the warm water helps the muscle.


              Diagnosed May 2021 bulbar onset als.


                Physio came said she didn't know anything about mnd and that was it. 😐
                when i can think of something profound i will update this.


                  denise - sounds about right. So frustrating when it seems most of us were really active before and just want to feel we are moving about in the right way.
                  Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

                  Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!


                    TinyLady hit the nail on the head. X
                    Diagnosed May 2021 bulbar onset als.


                      Exercise is important to me. I use a personal trainer who I have used for 10 years in a gym and now at home since the pandemic lockdown, for an hour a week although due to the restrictions of weak neck muscles, it’s turned into more of a sports massage in recent months.

                      I discovered that it’s not generally part of a physio’s role to give massage these days and certainly not sports massages.

                      I also signed up to a program of 8 weeks of exercise sessions at my local hospice. They have been relatively gentle with warming up stretching of limbs etc as well as use of equipment like small weights and MOTORmed bikes. I imagine other hospices if not all, might offer something similar.
                      Last edited by John D; 1 June 2022, 16:26.
                      Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.


                        Our physio stressed that the carers should be waiting till you have managed to completely relax the leg/arm/hand before they do the exercises, and allowing 5 seconds between repeating each stretch or flex. You are not muscle building but keeping the joints movable and the ligaments stretched so that later on you won't be in pain as you are assisted in transfers or being dressed etc.