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    #16
    Originally posted by Rosemary6NT View Post
    I’m lucky that I get on well with my NIV. I panic if I can’t breathe well. I use my BiPap during the day as well as at night. I’m shocked at how quickly my breathing has deteriorated.
    I’m glad that your BiPap works for you but sorry that your breathing has deteriorated so much. Love Lynne 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.

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      #17
      Lynne K I need to take a leaf out of your book and practice breath stacking more🙏😘
      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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        #18
        Originally posted by LindaB View Post
        Lynne K I need to take a leaf out of your book and practice breath stacking more🙏😘
        Good luck with breath stacking 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.

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          #19
          I was given a depressing probably impossible choice for a cataract operation, either one in 4-6 weeks if I can lie flat or nearly flat for 20 minutes, or get put on a long indeterminate waiting list for an op with general anaesthetic. I had thought I could just use my Bipap with undernose mask, but apparently this doesn't allow enough access round the eye. Tried lying flat for 20 minutes telling myself I could do it, and I was just imagining I was breathless, but needless to say I didn't get very far. I asked about if it was okay to take oramorph, but they weren't keen as they said I had to be alert and follow instructions. Can't bear the thought of losing sight on top of everything else! Warning to those developing cataracts, get them done sooner rather than later! xx
          Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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            #20
            You really are going through the mill backwards. Big hug and loads of love. 🤗😊😘😍xx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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              #21
              Heather R good luck for a safe experience with your cataract op 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


                #22
                Heather R that's tough...I guess it's the waiting list option🙏😘
                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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                  #23
                  Gosh Heather, that's an awful situation to be in.

                  Originally posted by Heather R View Post
                  I had thought I could just use my Bipap with undernose mask, but apparently this doesn't allow enough access round the eye.
                  Heather, do you think you could lower the straps from around your eye socket area and still use it effectively? Maybe try it at home during the day. Could you get a different mask type just for the op? It's only a tiny Oramorph dose you take, isn't it, was the dose mentioned before it was written off? There must be some way of using NIV during the procedure...

                  I need to say that you must be very careful about having a general anaesthetic with poor respiratory function - take advice from the Consultant Anaesthetist prior to putting yourself on the waiting list.

                  Is it the same hospital you attend for your MND Clinic appointments? 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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                    #24
                    Ellie not the same hospital. I was presuming general anaesthetic would not be viable , especially in the future. I will ask about different masks thanks for suggestions. The hospice nurse has advised 1 ml oramorph when I feel I need it, and I think I am pretty alert still. Tomorrow I will test lying flat with oramorph xx
                    Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                      #25
                      Heather R what a terrible dilemma, I hope you can find a way round it xx
                      Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                        #26
                        Thanks too Matthew, Linda, Rosemary and Lynne xxx
                        Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                          #27
                          Originally posted by Heather R View Post
                          The hospice nurse has advised 1 ml oramorph when I feel I need it, and I think I am pretty alert still.
                          You're absolutely right, 1ml of Oramorph isn't going to curb much, if any, of your alertness Heather - see how you get on with it tomorrow 🤞🤞😘
                          ​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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