Announcement

Collapse
No announcement yet.

How to manage hospital visits

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    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?
    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

    #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.

    Comment


      #3
      Oh 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.

      Comment


        #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

        Comment


          #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 yes, John Radcliffe. Good grief, that’s amazing! I’ve never heard of Changing Places. I’ll google it. Many thanks Ellie xx
            Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

            Comment


              #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 , 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

                Comment


                  #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 xx
                  Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

                  Comment


                    #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 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.​​​​​​

                      Comment


                        #12
                        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.
                        Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

                        Comment


                          #13
                          Originally posted by LindaB View Post
                          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....
                          Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

                          Comment


                            #14
                            Could you reschedule the appointment to a video call 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

                              Comment

                              Working...
                              X