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The End- Thank you all

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    Good afternoon Chrissie

    As with everybody else thank you for keeping us updated and hope the nursing home is working out well.

    Hope your uncle despite being not much use to you is not been too badly injured?


    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

    "Things turn out the best for people who make the best of the way things turn out"


      Chrissie, it sounds like your gran could have benefited from a feeding tube and eye gaze commynication. Hasn't her MND OT or her neurologist talked about these things?, love Lynne x
      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.


        Hi Nunhead- He had a little concussion, so not too badly injured. I think he was more shocked than anything.

        Lynne- Myself and the Palliative Team kept on urging Gran to have a feeding tube whilst she still could, but she kept refusing until it was too late for her to have one. I've tried her with speech apps, including one that can be controlled with eye gaze, but she just can't seem to grasp the concept of the technology (not surprising, as she would never even have the most basic of mobile phones prior to becoming ill).

        Over the weekend, her choking episodes became more frequent, particularly overnight on Saturday. The nurses gave her additional morphine and something to clear up the mucus. She still hasn't eaten anything and says she still isn't hungry, so that's now 3 weeks without food or any kind of nutrition. Her nurse spoke to me on Saturday to say that there is blood in her urine and it's evident that her kidneys are shutting down because the colour of her urine is nearly black (and there's very little of it due to her not drinking very much- she admitted to me that she is scared to drink because that's what causes her to choke). They have started adding a little thickener to her liquid, which she never accepted in the past.
        She also has a grade 2 bedsore under her bottom, but she can't have it alleviated via a pillow under her because it makes her literally fall to the side and she no longer has the strength to pull herself back up when this happens. I do believe they're going to try her on a different mattress to see if it helps, but I can't see her accepting it (she can't stand those ripply-type air mattresses). Her heels are equally sore- her feet are placed inside some kind of bubble-wrap-type pair of boots- I think they're helping a little.
        "This, too, shall pass"


          If your Gran's body is shutting down, Chrissie, the nursing focus should be on controlling every single bit of pain and discomfort she has - that is the essence of palliative care.

          That may mean more morphine and appropriate treatment for the bed sores - have they even put a hydrocolloid or an alginate dressing on her wound? (They should be readily available in a nursing home) If your Gran is wearing pads and it's continence-releated, ask for her to be prescribed Cavilon Advanced (not the Cavilon Barrier Cream) which is applied every few days.

          But, the main thing is, as I said, at this stage the lady should not be feeling even a twinge of pain...

          Hang in there.

          Big, big hug to you and to you Gran.

          Love Ellie.
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.