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    #91
    denise
    Forum Member
    denise well the hospice OT was happy to be here when the company came...however I couldn't coordinate it to suit everyone. When the company send me the plan I'll discuss with her and get her views. She may think of questions I need to ask or make suggestions...I bow to her expertise although ulimately, like with most things, I'll hear her views and then make my own decisions.
    I'm hoping the company say it's possible...that's the 1st stepπŸ‘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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      #92
      Yeah Linda I'm with you.

      It just all takes so long. I need things now not when we get to enjoy things for a couple of weeks and then need a rethink.

      I'm interested to see what you end up doing. Hows the wheelchair?
      when i can think of something profound i will update this.

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        #93
        denise
        Forum Member
        denise the wheelchair seems to tick the boxes. I haven't used it yet as really need the stair lift 1st.
        It's definitely light weight & I would say well made. The large wheels are easily removable....helping with the weight.
        I'll update once I've road testedπŸ‘πŸ»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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          #94
          Wheelchair has arrived. Just need to get it out of the box. The guy dropped it on the doorstep and went to his van. Saw me and came running back. Dont pick it up its heavy! Supposed to be a light weight wheelchair! Anyway I said I live upstairs but it's ok I'm going to put it in my car. He said if I have problems hed come back. Didn't leave his number πŸ€”
          when i can think of something profound i will update this.

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            #95
            2nd December staircrawler guy is coming. I shall let you know how it goes.
            when i can think of something profound i will update this.

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              #96
              That’s good Denise. Good luck 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


                #97
                Originally posted by denise View Post
                2nd December staircrawler guy is coming.
                I was thinking that is ages away but realised that 2nd December is next week 😲😲 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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                  #98
                  Staircrawler in the afternoon. Biobidet in the morning. There will be a plumber and electrician in my bathroom at 9am.
                  Fun fun fun.
                  when i can think of something profound i will update this.

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                    #99
                    Hi Denise, sounds like you are getting sorted.I suggest you ask OT about a shower chair that goes over the bio bidet as I had lots of problems getting one that fitted.
                    Hope adaptions Will really help.
                    Best wishes
                    Mary

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                      Update:I'm no further forward with an outside stairliftπŸ˜“
                      Approached 3-4 companies none of whom have proved satisfactory. One wanted me to give them a 2k deposit and if it didn't work out I could be refunded....yeah right....no thanks.
                      Anyway I've contacted my Neuro rehab specialist physio...she's visiting today. She's referred me to the local authority OT dept. regarding the stair lift (there's a waiting list however those with a diagnosis of MND may be given priority).
                      She will also advise/provide ankle supports for foot drop and assess for any other equipment I might want/need. I haven't seen her for a few months so will be good to catch up.πŸ‘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


                        Sounds promising good luck. πŸ€πŸ‘πŸ€žπŸ˜xx
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                        Comment


                          Originally posted by LindaB View Post
                          I've contacted my Neuro rehab specialist physio...she's visiting today. She's referred me to the local authority OT dept. regarding the stair lift (there's a waiting list however those with a diagnosis of MND may be given priority).
                          She will also advise/provide ankle supports for foot drop and assess for any other equipment I might want/need.
                          Disappointing re the stair lift companies 😟 Hope your case is expedited and there's no may about priority for MND...

                          I'm sure you'll let us know how today's visit went. 😘😘
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          ​

                          Comment


                            Good luck Linda 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


                              Neuro rehab specialist physio visit went well...although in future I must ask for morning visits as I felt tired.

                              She has provided me with 'foot up' supports to prevent foot drop when walking. So much Velcro though and although ok for now as my hands get weaker may be an issue.

                              Also ordering a kitchen trolley to help move things around...such as meals/drinks from the kitchen to the lounge/dining room etc

                              Also sending me some foam grips for cutlery

                              I'm referred to local authority OT re outside chair lift....she did say they queried how it would be financed πŸ™„

                              She took my measurements for referral to wheelchair service and we discussed an electric chair.

                              She did say they meet monthly to discuss patients in the community with MND...district nurses....hospice team...Neuro rehab team...local authority OT and she will discuss the outside chair lift situation for me.

                              ​​​​​​It's good to keep my name in that MDT so they don't lose sight of me πŸ˜‰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


                                Originally posted by LindaB View Post
                                Neuro rehab specialist physio visit went well...although in future I must ask for morning visits as I felt tired.
                                In one way that's the best time to be assessed Linda, it's when (for want of a better phrase) your true needs are most apparent and when HCPs can see clearer which gizmos may help you.

                                Originally posted by LindaB View Post
                                She has provided me with 'foot up' supports to prevent foot drop when walking. So much Velcro though and although ok for now as my hands get weaker may be an issue.
                                The Velcro does lose some of its grippiness over time, but you may look around your apartment for a 'stick', litter picker etc, which may be of help later πŸ˜‰ I used to use my teeth to open my hand splints, foot supports might be more of a challenge 😍 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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