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    Thanks Ellie good point about 'true needs' ....it's funny I still try and present the 'best' version of myself...must stop doing that as it's not always realistic (old habits die hard)😏

    Litter picker....also good thinking....you're so resourceful....thank you chickletπŸ’‹πŸ’‹

    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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      Originally posted by LindaB View Post
      ...you're so resourceful....
      Necessity is the mother of invention... xx

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

      Comment


        Hi @LindaB,

        Just to say I used " foot ups " to lift my feet for a while with my rollator. I had some which went with trainers and some for indoors which went around my bare feet. They worked really well but they do need pulling tight and they need replacing quite often as the velcro gets loose.

        Hugs to you. XxπŸ˜˜πŸ€—

        Comment


          Thanks Deb hug right back at yahπŸ€—xx
          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

          Comment


            LindaB I ask, with some degree of trepidation, have you heard any more about the stair lift? 😘
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user
            .
            ​

            Comment


              Originally posted by Ellie View Post
              LindaB I ask, with some degree of trepidation, have you heard any more about the stair lift? 😘
              Oh don't get me started trepidation is right!

              We went round in circles with various companies...some of whom seemed to think I'd pay a large sum of money upfront with no plan ....not happening

              Anyway have now returned back to one of the original companies who are now talking sensibly. I've also been referred to my local authority OT dept for assessment and support (however heard nothing even though I've chased this)

              My thoughts are I'll end up paying for it privately...however so be it....

              It's frustrating however I live in hope....will update when I can😘
              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

              Comment


                LindaB Frustrating for sure... 😟

                Can you still get in and out of your flat? xx
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user
                .
                ​

                Comment


                  Ellie only with help and if I feel I have the energy😏 so not as often as I'd like...xx
                  Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

                  Comment


                    I know that feeling πŸ€—πŸ€—πŸ€—πŸ€žπŸ˜˜
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user
                    .
                    ​

                    Comment


                      So local authority OT completed an assessment visit today...with a view to stair lift.

                      She will write up her assessment for approval by a manager. If approved I'll then be financially assessed.

                      Then if all ok they get quotes from 2 companies for the work.

                      Long winded however I'll be classed as a priority.

                      My only gripe was she clearly didn't know much about MND....sigh

                      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

                      Comment


                        Thanks for the update LindaB Needless to say I've everything crossed for you. πŸ’‹
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user
                        .
                        ​

                        Comment


                          Everything crossed 🀞😁😘πŸͺxx
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                          Comment


                            Thanks you guys
                            Ellie
                            @matthew55

                            πŸ’‹πŸ’‹
                            Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

                            Comment


                              Linda Have you heard anything else?

                              I haven't heard anything about the stair climber thing and yet that was back in December. Not fussed at the moment because I don't think I'm fit enough to deal with it.

                              when i can think of something profound i will update this.

                              Comment


                                denise it's still with the local authority OT...πŸ‘πŸ»
                                Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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