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    #16
    WheelsOfSteel
    A tilt-in-space armchair is also useful in maintaining neck and head posture. It allows the muscle to rest in a good position and reduced muscle fatigue and pain.

    Ask for an Occupational Therapist assessment. Many areas supply these arm chairs through Social Services funded equipment stores (although as I have learnt from reading posts on this Forum, not all areas). Tilt-in -Space-Wheelchairs are also available.
    Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

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      #17
      Originally posted by Claireflo View Post
      Has anyone tried the Heads Up Collar which has been designed by Sheffield Uni with people who have MND? ​​​
      Yes, the Sheffield Snood/HeadUp Collar is one of the many different collars I've worn. As with all collars, individual experiences can vary widely and it's the type of thing a user needs to wear for a few days to really evaluate, but here's my take on the HeadUp Collar:

      I was part of the clinical trial and wore it for 2+ years.

      Pros:
      • highly customisable - its stays/supports are placed where maximum support is needed so, in my case, extra stays were put on the left side of the collar (they are covered in Velcro, so are easy to move)
      • gives good support to the chin, which is where many collars fail
      • easy to put on and take off
      • comfortable on the collar bones, chin and neck
      Cons:
      • tends to 'hug' the throat, which may make some people feel claustrophobic and/or interfere with eating and drinking
      • the material is warm in the summer
      • there comes a point where it doesn't provide enough support, which is why I stopped using it
      Again, it's probably worth him giving it a try. 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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        #18
        Originally posted by Tabbycat View Post
        Tilt-in -Space-Wheelchairs are also available.
        Of note: powerchairs supplied to people with an MND sould have tilt in space feature included as standard, in fact there is an enhanced basic spec on a special 'Powered Neuro Wheelchair', thanks to work by the MNDA. 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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          #19
          I came across this contraption online and thought it would give us a laugh...

          ​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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            #20
            Ellie that is hilarious, I want one 🤣
            Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.

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              #21
              Suspended from a curtain hanger! I have tried some collars but not got on with them. Have just been sent Austen vista though to try. I have been relying on tip back chairs to support my head. Appreciate learning about others experience with collars xx
              Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                #22
                Heather R Hope you get on with that Aspen, Heather 🤞🤞 Let us know 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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                  #23
                  I'm wondering if the neck collar Elliehas found will be strong enough to keep me upright. I wonder if I could make one from some old knickers and a coat hanger... bit of sticky back plastic too and a pipe cleaner 🤣
                  Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                  Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                  Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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                    #24
                    We are "between" collars at the moment. Hubbies neck is now weak and leans to one side due to shortening of the muscles, despite physio.

                    He had a head mouse so there was a difficulty in getting a collar that would provide sufficient "easy" movement to control head mouse.

                    He now has eye gaze so we are due a visit to orthotics for something firmer as he doesn't need to move his head as freely now.

                    He does complain of neck pain and OT said that heads are heavy on weak muscles. Hopefully we will get a good neck bracelet soon.
                    Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

                    Respiratory and blood gases still within normal range.

                    No speech but sense of humour still fully intact.

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                      #25
                      TinyLady You're looking for a Blue Peter badge, aren't you 😏😘
                      ​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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                        #26
                        Well spotted Ellie 🤣🤣🤣
                        Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                        Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                        Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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                          #27
                          Thanks Ellie fir your experience of the heads up collar. It's the part that 'hugs' the throat that I don't think he would like. The physio is referring him to the orthorists (if I've spelt that correct) to look at options for him.

                          I saw the 'coat hanger' option when I was gpogling on the weekend, it also made me laugh.

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