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ALS- MND ongoing

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    You've room to play with on the settings Jon, esp on Ti and Back-up, if you find you need to fine tune them. I'm sure you'll find your optimal settings.

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


      Good news Jonboy - but I jolly well hope you get a discount for a bulk purchase! - if you don't need them all, there is always e-bay!
      Last edited by Kayleigh; 10 January 2019, 20:01.


        thats exactly what I will do


          Good old e-bay. I hope all goes well for you.
          Best wishes,
          Kayleigh x
          Last edited by Kayleigh; 10 January 2019, 21:32.


            I was whisked off to a Hospice so unable to finish my NIV research for a while. I have a Talley active matress hereand sitting around here has cleared up the lymphodema in both feet already. I wish I wasat home with mywife though. I started criticising the NHS for poor treatment of ALSers, so they suggested seeing the trick cyclist. pfft


              Hi Jonboy,

              I hope you are feeling much better soon.

              Hopefully, that 'trick cyclist' is kind to you - but, of course, those 'trick cycling' sessions are not compulsory!

              Hopefully, you will be back home with your wife very soon.

              Kayleigh x
              Last edited by Kayleigh; 13 January 2019, 22:01.


                respite at the hospice is over - did not enjoy it, too much invasion of my privacy and many other issues I will not whinge about. I used to help raise £18000 ish a year for this hospice so I do not feel guilty about staying there.

                The positive outcome was OT have lent me an active mattress for my profiling bed, which is totally awesome. Try one out if you can.


                  Hi Jonboy

                  Welcome home! I expect you are glad to be back home with your wife, after being away for so long - and the good news is that you are back in time to watch 'Dancing on Ice' this evening!

                  Sorry to hear that you didn't enjoy your stay at the hospice very much. Understandably, staying at a hospice might not be everyone's 'cup of tea', but they provide a wealth of support that many of us would be feel lost without, and so thanks for all your fundraising Jonboy - you are a kind and cool guy!

                  Thanks for the tip about the comfort of an 'active mattress'. I had not heard of them before and so googled them. Looks like they can be a little pricey to purchase, and so it's great if they can be sourced for us via our OT etc.


                  I hope you enjoy being back with your home comforts again, and that you have a great afternoon/evening (even if you don't watch Gemma Collins and other celebs ice-skating on TV! ) .

                  Kayleigh x
                  Last edited by Kayleigh; 3 February 2019, 14:47.