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    How to manage hospital visits

    I’ve deteriorated over the last couple of weeks such that I now need to be hoisted on to the loo when away from home (my partner can still manage the Molift at home). I have an outpatient hospital appointment tomorrow which usually ends up being a whole day affair. I therefore will not be able to use a loo for many hours which I have just realised will be impossible. How do other people cope with this situation?

    #2
    Which hospital Rosemary? It might have fully accessible bathrooms, complete with hoists.

    Did you google it? 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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      #3
      Oh
      Rosemary6NT
      Forum Member
      Rosemary6NT I think you're in luck! You attend John Radcliffe hospital, don't you?

      There is a Changing Places toilet, with a ceiling hoist, located in the main reception area (key available at reception) 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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        #4
        Is there anything you don't know about? 😉😁😅😍xx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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          #5
          Yes, heaps and heaps and heaps of stuff. 😏😍😍😚😚
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          Comment


            #6
            Ellie
            Forum Member
            Ellie yes, John Radcliffe. Good grief, that’s amazing! I’ve never heard of Changing Places. I’ll google it. Many thanks
            Ellie
            Forum Member
            Ellie xx

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              #7
              John Radcliffe Changing Places Loo (2).png
              xx
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                Ellie
                Forum Member
                Ellie , will Rosemary need to take her own sling? Or are the slings available?
                Andy
                Sporadic MND/ALS - Limb onset - Diagnosed May 2016
                night time NIPPY, cough assist, PEG


                Today is the tomorrow I feared yesterday

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                  #9
                  I guess the challenge would be how to use the hoist unless there is someone there to demonstrate as we have not used one before. Thanks
                  Ellie
                  Forum Member
                  Ellie xx

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                    #10
                    You bring your own sling, presumably for hygiene reasons.

                    If you use a full hoist at home, a ceiling hoist isn't much different but, if you're under time pressure, I could see it being stressful for you both...

                    I wonder if you phoned the hospital and spoke to reception, they may help you with further info? xx
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    Comment


                      #11
                      Rosemary6NT
                      Forum Member
                      Rosemary6NT is it possible to have a virtual appointment?
                      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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                        #12
                        Ellie
                        Forum Member
                        Ellie I don’t have a hoist at home yet, my partner pulls me up on a Molift Raiser Pro but it has to be from a raised surface and is getting very difficult for her. It won’t work from average height chair/loo. A hoist is on the cards I think.

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                          #13
                          Originally posted by LindaB View Post
                          Rosemary6NT
                          Forum Member
                          Rosemary6NT is it possible to have a virtual appointment?
                          That would be ideal. I don’t know if that can be arranged on the day....

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                            #14
                            Could you reschedule the appointment to a video call
                            Rosemary6NT
                            Forum Member
                            Rosemary6NT 🤞🤞 xx
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            Comment


                              #15
                              Hi Rosemary6NT
                              Is now the time to get the OT to come and reassess your current method of transfers/ equipment which your partner is finding more difficult.
                              I have found it’s better to get OT sooner rather than later as she has advised on so many moving and handling issues and equipment.
                              Also on several hospital appointments I have been advised by the team that if it’s a real ordeal to get to the hospital they will and have sent somebody out to my home to do their assessment.I wouldn’t take this up unless I really need it and in your situation it might be worth asking?

                              @Ellie
                              Your years of living with MND are unimaginable but I can see how you help daily so many forum members .Thankyou so much.
                              Best wishew
                              Maryx

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