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    Six Town Housing Major Adaptions Team

    Steve rang the Council about my adaptions and shower wheelchair. They said that they are not doing repairs in the foreseeable future, except emergencies because of the covid situation. It’s just as well that I can still stand for Steve to shower my bits, transfer to and from my RR chair and wheelchair using my walker and transfer to bed from my wheelchair holding on to the wheelchair and bed guard. The Council don’t have a clue xx
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

    I'm staying positive and taking each day as it comes.

    #2
    Lynne K I would argue yours is an emergency😡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


      #3
      I’ll ask Steve to do that, thanks xx
      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

      I'm staying positive and taking each day as it comes.

      Comment


        #4
        I filled in an online form and said that it is an emergency and I want to complain. Got an auto reply saying that they’ll contact me within 24 hours. But Steve’s done that 6 times already and got the same message about no work in foreseeable future unless emergencies. Fingers crossed that my message gets through to somebody xx
        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

        I'm staying positive and taking each day as it comes.

        Comment


          #5
          Lynne K good for you & Steve. The loudest and most persistent voices do get listened to👏🏻👍🏻💪🏻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


            #6
            I got a reply. It said that the messages that my husband heard are only meant for Day to Day Repairs. Major Adaptions are still working on jobs as they came in so I’ll hear when my turn comes xx
            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

            I'm staying positive and taking each day as it comes.

            Comment


              #7
              Lynne K good at least you for a reply...the one thing not on our side is time...so you should be a priority 💋
              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


                #8
                Originally posted by Lynne K View Post
                Steve rang the Council about my adaptions and shower wheelchair.
                OK, so only day-to-day repairs are being done and no structural adaptations, but what about the shower chair

                Presumably your OT requested the shower chair so isn't it incumbent on them to keep you safe, now one has been requested? If you ended up in A&E with an injury from not being safe in the shower, a chair would arrive promptly.

                I'm quite fatalistic, aren't I 🙄 but if an OT etc. has said you should use an XYZ, then you need it sooner not later...

                Can you message them about the chair saying you feel unsafe?

                Sorry Lynne, ignore me if you wish, we all know that I can be a bossy 🐄 😘😘

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

                Comment


                  #9
                  I don’t know Ellie but thanks xx
                  ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                  I'm staying positive and taking each day as it comes.

                  Comment


                    #10
                    Originally posted by LindaB View Post
                    Lynne K good at least you for a reply...the one thing not on our side is time...so you should be a priority 💋
                    Yes Linda I’m priority but others might also be and each job is a major job xx
                    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                    I'm staying positive and taking each day as it comes.

                    Comment


                      #11
                      Hi Lynne K I'm so sorry life is so hard at the moment.

                      ,Living with MND is hard enough without having to battle for everything. I have my showerchair but its been such a farce.

                      It had to go before a panel who weren't meeting because of covid.How about a zoom meeting ? Eventually it came with a comode seat when I had requested a full seat. Apparently the medical rep thought it would be better for me in the long term grrr!! I did ask where he acquired his crystal ball.

                      So back to the panel for a new seat, which then couldn't be delivered because of covid. We managed to get a date if we bought it ourselves but by this time I was not about to give in.

                      It did leave me tearful and emotional to have to argue for it, however.

                      Hugs to you,
                      Love Debbie x

                      Comment


                        #12
                        Ah Debbie, what a challenge xx
                        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                        I'm staying positive and taking each day as it comes.

                        Comment


                          #13
                          Hi Lynne
                          Could your OT email major adaptations department and express the urgency of needing an adaption to property,Outlining any recent falls, I don’t know what adaptions you need to enable you to keep safe and independent as possible but OT should be able to promote the urgency.
                          Good Luck
                          Mary x

                          Comment


                            #14
                            Originally posted by Mary C View Post
                            Hi Lynne
                            Could your OT email major adaptations department and express the urgency of needing an adaption to property,Outlining any recent falls, I don’t know what adaptions you need to enable you to keep safe and independent as possible but OT should be able to promote the urgency.
                            Good Luck
                            Mary x
                            The adaptions are widening my bedroom door and opening it to the wall which it doesn’t do now; widening our lounge door, putting a snazzy two piece door and making it open to the wall; making our front door open with a key fob and connecting it to my possom; widening our path towards back of house and lastly making a new less steep path from my ramp to my car, it’ll go a bit wavy to cope with the slope. There’s also a Closomat loo and our sink needs to be smaller for that and further toward the shower area. Lastly the shower wheelchair. Love Lynne xx
                            Last edited by Lynne K; 18 January 2022, 07:47.
                            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                            I'm staying positive and taking each day as it comes.

                            Comment

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