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Thread: Hi, Im Juan

  1. #11
    Forum Member Ellie's Avatar
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    Hi Ann,

    I hope you mind me butting in on your post to Kayleigh.

    When I had difficulty opening the push-button of my microwave, I used a key grip without a key - my thumb and fingers were too weak to push the button in hard enough for it to open, but I could grip the key grip firmly and had enough shoulder & arm strength to use the key grip to open the microwave. I also used various utensils, such as a wooden spoon, if the key grip wasn't at hand!

    IDK if something like that would work for you?

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  2. #12
    Forum Member Kayleigh's Avatar
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    Hello Ann

    Sorry to hear about the pains in your legs etc and that it is affecting your ability to get a good night's sleep. Perhaps taking quinine would help to ease the pain, but there are also other recommended medications that can be prescribed if quinine isn't effective, as detailed in the 'For muscle cramps' drop down on the MNDA's webpage about pain (link provided below):-

    http://https://www.mndassociation.org/professionals/management-of-mnd/management-by-symptoms/pain/

    I think I have read on this forum that taking magnesium supplements can help to alleviate cramps - but hopefully someone here who has experience of taking them can give you more detailed advice.

    I don't know if physiotherapy (also mentioned on the Mnda's webpage about pain) can be provided free of charge on the NHS (possibly organised via our physiotherapist or occupational therapist if we have one?) - but others on the forum might know.

    I have also read advice on the forum that might help with turning in bed e.g. having grab rails at the side of the bed and using special 'silky' sheets. I don't have experience of using the special sheets but I suppose that how helpful they are with turning probably depends on how limited a person's mobility is. A profile bed and a specialist mattress might help you to be more comfortable in bed - and I understand that some people with Mnd have been provided with these via their OT, district nurse etc. (You might already know about these suggestions but just thought I would share them with you, in case any of them are helpful).

    It's good that Ellie has some great advice about opening the microwave door- I've been looking on the Internet for a gadget to help with this but can't find anything yet! Top Cat Terry might also have some top tips - his knowledge about helpful gadgets is much more extensive than mine!

    Love Kayleigh xx

    PS Thank you for pointing out that anxiety/stress is not the only factor (and not necessarily the main one) that can affect our ability to sleep - yes, sadly, we have got a mountain of challenges to deal with which could potentially affect the quantity and quality of our sleep eg pain, cramps, respiratory problems, mobility issues etc etc ....
    Last edited by Kayleigh; 3rd July 2019 at 22:00.

  3. #13
    Forum Member AndyB's Avatar
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    Hi Juan,

    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.

    Andy
    Sporadic MND/ALS - Limb onset - Diagnosed May 2016

    Today is the tomorrow I feared yesterday

  4. #14
    Forum Member Ellie's Avatar
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    Hi Andy,

    Just to pick up on your using a CPAP machine...

    With ALS, you really should be using a BiPAP machine, not a CPAP. The CPAP means you having to breathe out against pressure, making your respiratory muscles work harder.

    By using a BiPAP, you'd still get the same benefit from positive pressure as you breathe in, but your respiratory muscles don't have to work so hard as you're not breathing out against pressure.

    Anything which eases the workload on weakening muscles has to be good!!

    Take care,

    Love Ellie.
    Last edited by Ellie; 3rd July 2019 at 17:21.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  5. #15
    Forum Member JAY TEE's Avatar
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    Juan, having a kip with MND, yes I often have cat nap in my wheelchair which I am in all day. This I was told is the side effects of all the drugs we are on. If out and about during day I always sleep well at night going to bed about 22.00 but read for a while then awake and up by 07.30. I sleep well but I am naughty I have pint before bedtime, That makes me sleepy. Best wishes John.

  6. #16
    Forum Member AndyB's Avatar
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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

    Today is the tomorrow I feared yesterday

  7. #17
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    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.
    Love
    Ann x

  8. #18
    Forum Member nunhead_man's Avatar
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    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.

    Warmly


    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.

    Andy[/QUOTE]
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

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