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    Originally posted by matthew55 View Post
    The operation is a breeze. They say sedation but I can't remember a thing after lying down. You will be fine. πŸ‘πŸ˜πŸ˜—πŸ˜xx
    My MND specialist nurse has warned me they are now doing lighter sedation so the patient is more aware
    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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      Originally posted by Rosemary6NT View Post
      Morning all. Off to hospital today to have PEG fitted tomorrow. Apprehensive as I'm a wimp and over the last few days have lost the ability to transfer independently. I wonder how things will work in hospital
      Good luck with hospital and your procedure....hope all goes well. You're definitely not a wimp...far from it. Sorry to hear transfers have become too difficult...there will be staff in hospital to help you with that. Is anyone going with you (assuming it's permitted)
      Sending love and lightπŸ™
      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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        Originally posted by LindaB View Post

        Good luck with hospital and your procedure....hope all goes well. You're definitely not a wimp...far from it. Sorry to hear transfers have become too difficult...there will be staff in hospital to help you with that. Is anyone going with you (assuming it's permitted)
        Sending love and lightπŸ™
        Thanks LindaB my partner will be taking me. Just phoned to check bed available and they are still waiting for a discharge , they will let me know at 4pm. All dressed up and nowhere to go. It's nearly a 2hour journey
        Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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          Originally posted by Rosemary6NT View Post
          Morning all. Off to hospital today to have PEG fitted tomorrow. Apprehensive as I'm a wimp and over the last few days have lost the ability to transfer independently. I wonder how things will work in hospital
          My husband had his RIG in May and as his breathing muscles were weak they did it under light sedation - in fact beforehand they made quite a big deal about his breathing and he was dreading it but it actually went really well. The anaesthetist came to see him before the procedure and all the staff were very kind and reassuring and what to us was a huge deal was a simple procedure to them. They were pro-active afterwards in getting him sitting up, drinking etc and we were trained on the care of the feeding tube by the dietician and an Abbot nurse who came to the ward. He got home two days after the procedure.

          He also couldn't transfer independently (he could stand with assistance and do a bed/chair-to chair transfer but not walk) so two nurses helped him in and out of bed and onto a commode etc. Though so busy they were all kind and helpful. My husband still had his voice and the use of his hands so of course that helped a lot.

          Best wishes for tomorrow - and don't call yourself a wimp! - it's a big deal getting a feeding tube.
          Husband died 14 months after MND diagnosis.

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            Thanks Betty May . That's reassuring. My breathing is also a bit compromised so they'll be doing it with me semi-upright (they have a sloping bed). Not looking forward to the commode bit as they will need a hoist and I've never had anyone but my partner to "attend" to me before . Has to happen some time I guess
            Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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              Chin up girl. You can do this. 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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                Originally posted by Rosemary6NT View Post
                Not looking forward to the commode bit as they will need a hoist and I've never had anyone but my partner to "attend" to me before
                I used to shut my eyes tightly like a 3 year old, pretend it wasn't happening πŸ™„πŸ€£πŸ€£ and go to my 'happy place'. Now it's so normal that I don't flinch at the thought of male carers in the hospice bring me to the loo or shower me...

                Hope PEG procedure goes to plan and, you're definitely *not* a wimp... 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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                  Hope went ok @Rosemary6NT xx me back at home again after getting shower-room done
                  Last edited by Gordan1111; 6 December 2021, 17:11.

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                    Morning all. Up at ridiculous hour to make sure I get first carer. Last two days he has turned up I've been asleep. πŸ˜΄πŸ€”πŸ˜πŸ˜
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                      I slept late too and didn't wake till seven.
                      good morning all.
                      It's all funny

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                        Morning campers🌞🌞🌞
                        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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                          Morning everyone. Blowing a gale out there. I can usually see the Edison lighthouse. If I get to see it today it means I've been washed out to sea. 😳
                          when i can think of something profound i will update this.

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                            Blowing a gale here too, so much so that we lost power for a few hours this morning.

                            I was dressed and warm by the fire when power was restored, so I couldn't be bothered undressing for a shower 😏 - I don't think I stink (much) 😍😍

                            I had a lovely sleep, gales or no gales. 😘
                            ​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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                              Weather getting worse in my neck of the woods. I'm going back to bed for an audio book listen and nap. Stay cosy everyone.
                              πŸ“šπŸ˜΄
                              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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                                Are your Nippy batteries ok Ellie?

                                Hugs

                                Doug
                                Diagnosed April 2017

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