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    #46
    Originally posted by denise View Post
    November a guy from a stair climber company is coming with our OT to assess whether me or our stairs will be suitable.

    Onwards and upwards πŸ§šβ€β™€οΈ
    It is such a shame that when we say we Need something, it is because we Need it then or very soon not in six to nine months time.
    Richard

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      #47
      Exactly Richard that's why I did what I did.

      Staircrawler is for outside steps. Might not be suitable for inside but who knows. I'm looking forward to seeing it.

      Got the ok from OT for wheelchair so now we wait. All I do.
      when i can think of something profound i will update this.

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        #48
        Hi Denise, You are having a tough time and hope the stairlift helps you both get in and out of your apartment safely.
        Is it worth talking to the practice manager at your doctors surgery to sort out vaccinations?
        Have a good day
        love
        Mary xx

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          #49
          Originally posted by denise View Post
          Staircrawler is for outside steps.
          I see, hopefully your place is suitable. 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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            #50
            I think they will be looking at the stair crawler and me! My ability to do what needs to be done. πŸ™„
            when i can think of something profound i will update this.

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              #51
              Hi Denise,
              I had a stairlift fitted which looks the same as yours.My mobility got worse after using it for a few months so I progressed to a through floor lift which I had fitted before I needed it as was aware of my deterioration.
              Have to say the stairlift and through floor lift( both second hand) meant I could still get upstairs to my wetroom and wet room.
              My transfers are now getting wobbly so more equipment arrived a few days ago via OT to help with transfers when the need arises.
              Not sure how Stephen will get a wheelchair in and out of your home?My manual wheelchair came quickly but powered chair took 6 months to arrive.
              You are having such a hard time getting equipment and support.Did you ever get linked to a palliative care team at the local hospice?
              Hope you have a good weekend xxx
              Mary

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                #52
                denise
                Meant to say I can get to bedroom and wetroom
                ​​​​​​​mary x

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                  #53
                  Originally posted by denise View Post
                  I think they will be looking at the stair crawler and me! My ability to do what needs to be done. πŸ™„
                  Yes, you might be a few cans of spinach short of having Popeye's πŸ’ͺ

                  The only time I used one, 2 burly Greek men were assigned to the job, but one would have done.

                  Good luck! 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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                    #54
                    No Mary not heard anything from the hospice though I asked for some respite.

                    Well if theres and Greek men around ellie then they can muck in. I gather you mean with help using the stair crawler 🀭
                    when i can think of something profound i will update this.

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                      #55
                      denise
                      Hi Denise, It seems every time you ask for help there is a hold up.Does Stephen have a lead nurse from. A palliative care team yet? It would make life easier if you had a key person to liaise with.
                      Respite might be provided by your local hospice or a nursing home setting and can take a little time to arrange.Would day care help to give you both a break once or twice a week?
                      Lets Hope the coming week is less stressful
                      Take care of yourself Denise
                      Best wishes
                      Mary

                      Comment


                        #56
                        Originally posted by denise View Post
                        Well if theres and Greek men around ellie then they can muck in. I gather you mean with help using the stair crawler 🀭
                        Of course... 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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                          #57
                          The problem with Greek workmen is everything is tomorrow.πŸ˜‰πŸ€—πŸ˜˜πŸ˜xx
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                            #58
                            Tomorrow would be good.

                            Everything takes months. It's bad enough asking. My generation didn't ask for help we just got on with it. I hate asking I find it difficult. But it's not initially for me but equipment makes my life easier. Then I wait and it's in this time I risk hurting myself.

                            πŸ™
                            when i can think of something profound i will update this.

                            Comment


                              #59
                              Oh Denise.. you're not even asking for yourself.

                              I am so sorry that life is so hard for you and I hope with all my ❀ that you get the help and support you need soon.

                              Hugs to you πŸ˜˜πŸ€—x

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                                #60
                                Community nurse coming on Tuesday so this might be a big help. Hope so. Not sure what one is or what they do but soon find out. One big learning curve.
                                😎
                                when i can think of something profound i will update this.

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