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Hi, Im Juan

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    Hi Ellie,

    So far my breathing is unaffected by my MND, it’s mainly my feet and legs with my hands occasionally joining the party. I’m having my breathing checked again next week so I’m hoping my lungs are still fully functioning.

    Love Andy
    Sporadic MND/ALS - Limb onset - Diagnosed May 2016
    night time NIPPY, cough assist, PEG

    Today is the tomorrow I feared yesterday


      Hello Ellie
      I always value your contribution. Thank you for your suggestion.
      I am using a wooden spoon to open the microwave at the moment but it is getting harder. I will try the key grip.
      I seem to have been on a downward spiral since moving home. I find turning in bed more and more difficult which disrupts my sleep.
      I do try to stay optimistic but wish I could be as positive as you. I really worry about my future care when the time comes and I am unable to be in control of it. Nothing seems to be joined up.
      Ann x


        Hi Juan,

        Can I repeat the question that was asked earlier about where you are based in doing this study?

        Interestingly, my experiences recently are similar to that of AndyB, in that my neurologist wanted a baseline reading of my lung capacity and found I had sleep apnoea, for which I now have a breathing machine.

        However, my snoring was never as bad as Andy B's in that it did not wake me up, but it did wake my wife up and there was significant evidence of oxygen starvation on several occasions in my overnight sleep monitoring.

        I am now waiting for a second overnight sleep monitoring check to see whether the breathing machine I have been given is improved my overnight oxygenation.


        Getting back on topic, shortly after my MND diagnosis I was referred to the sleep and ventilation clinic so that a baseline reading of my lung capacity could be taken. At my appointment my wife jokingly mentioned my snoring to the consultant. He said that it may be possible to do something about it, so I was sent home with a device to monitor my breathing while I sleep. That outcome of this was that I was borderline sleep apnea, I was stopping breathing about 13 times an hour (15 and above is sleep apnea). Since I was borderline and because I have MND I was given a CPAP machine. The CPAP machine has stopped the snoring and I sleep much better, but my wife now complains about the noise of the machine ��

        I’d been snoring for quite a few years, often waking myself up and never having a decent night’s sleep.



        ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – 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"