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    JamesW Yes, so handy when these things can be done whenever most suits you and not just when it suits a nurse.

    My partner has been changing my feeding tube for years now and my daughter first changed it when she was 12 (under supervision, of course!)
    It's handy to have the change done first thing in the morning before my first meds, as I'm in bed and have an empty stomach. πŸ‘πŸ‘
    ​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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      Originally posted by JamesW View Post
      Ellie It’s every five weeks, which is quite frequent (maximum is 12) but as I’m diabetic I get quite a bit of sediment so can’t go the whole hog.

      It’s quite cool because the District Nurses are training my PA team leader to change it - they’ve never done this before but felt she was a good candidate to teach and I was a good patient ……. I know I’m a wimp but because of MND I lie pretty still on the bed 🀣🀣🀣

      😘😘😘
      It reminds me of about thirty years ago laying in a hospital bed with a different issue with a nurse on each side of the bed. One said keep looking at me and talking as the one on the other side pulled a three meter Jones tube from a hole in my abdomen. I just thought, why is the bed getting all wet. At least it gave the children something to say to their friends for years "daddy has two belly buttons". I would do a laughing face, but no idea how to do it.

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        Morning everyone. Christopher you are up really early or late πŸ€” have to say that really is a great conversational piece 🀣 .
        when i can think of something profound i will update this.

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          Morning denise (just learnt how to do that too :-) ) I was up late as even the co-codamol, amitriptyline, diazepam and etoricoxib are not setting me off to sleep. The amitriptyline made a big difference about two months ago by stopping me waking at about three with my thigh or arm doing strange things. Now its back to the, cant sleep. I don't know if its because I eat at about seven when my son comes homes and as I sit up more for it, i wonder wether its just setting everything off (as in the muscles having to overwork).
          I just thought the tube pulling was so weird at the time as I had no idea that I had three meters of tube winding its way around my intestine. You would have thought they would have said (laughing face).

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            Good morning Lovelies 😘😘

            And what a gorgeous day it is to be alive 🌞🌞
            ​
            ​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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              Ellie hate to say it but wouldn't make much difference how wonderful it is if we are dead. Unless of course we can come back!!! Perhaps we get a choice on how we are recycled πŸ˜‰
              when i can think of something profound i will update this.

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                denise Today I might have a fatal coughing fit or perhaps tonight is the night when my 15% lung function finally gives up; living on borrowed time makes me celebrate how truly wonderfully precious it is to be alive on a gorgeous day such as today. 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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                  Yesterday I thought I was going to pass out after climbing some stairs. I'm having a lung function test soon as I haven't been feeling too good. Yes I agree celebrate every beautiful day. 😘😘😘
                  when i can think of something profound i will update this.

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                    Morning hug buddies. Today looks a bit iffy so far. I don't even know what the forecast is.

                    πŸ€—πŸ€—πŸ˜˜πŸ€—πŸ€—πŸ˜ΈπŸ˜˜
                    when i can think of something profound i will update this.

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                      Chilly this morning! X
                      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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                        Good afternoon Lovely Loonies 😘😘

                        Grey and chilly day, so am in thermals neck to toe πŸ‘
                        ​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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                          Grey and cooler here. The wind is annoying but at least with it being cooler the bridge is quiet. πŸ™‚
                          when i can think of something profound i will update this.

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                            It was warm out at 3am but chilly now. Looks like its been raining. Forecast said we will all have sunshine 😎
                            when i can think of something profound i will update this.

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                              It rained here in Cheshire.
                              First early(ish) night for months and a reasonable sleep combined.

                              Having sleep quality and night time blood Oxygen monitored next week, so hopefully a way forward on things.

                              An admin and 'loose ends' Monday for me, so depending on how that goes, depends on how disjointed the week ahead will be...
                              2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - Confirmed Apr 2022: MND.
                              Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...

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                                Morning, no sunshine today, heavy rain first thing. It must have stopped now as the builders are out of their van and digging a moat around my house.
                                I may need that Chinook!
                                Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive 😺.

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