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  • Susie
    replied
    Very true Matthew x

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  • matthew55
    replied
    Nothing is strange when MND is involved. πŸ€—πŸ˜πŸ‘€πŸ˜œxx

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  • Susie
    replied
    Ellie thanks Ellie, I'll mention the Domus 4 to my OT.

    The dog collars are great, it's the easiest way to get my feet onto and off the footrests of my wheelchair. I can also stop my knees falling sideways unexpectedly, which can be quite painful when they hit something. Only ever take them off to shower.
    Would never have dreamt of such a thing a few months ago. How very strange life has become. A constant quest to make life easier. Keeps me out of trouble πŸ˜‚πŸ˜‚πŸ˜‚ xx

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  • Ellie
    replied
    Susie Currently I'm on a Domus 4 alternating air mattress.

    Originally posted by Susie View Post
    I have attached dog collars just above both knees so that I can pull my knees up.
    Ingenious Sue πŸ‘πŸ‘ I love it 🀩🀩

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  • EvelynMW
    replied
    Not been on the forum for a while - i seem to be a sleep queen! Last 3 nights, 11 hours, 12 hours, 7 hours (last nights was the shortest night sleep i have had for a very long time!) Sorry folks, i would like to sleep less - often not awake for much of the day at all!

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  • Susie
    replied
    Ellie Thanks, do you know what make your mattress is? My OT are now trying to source a new mattress for me which will be more comfortable.
    My OT is great and works very hard to keep me as comfortable as possible in all aspects of life. She comes out regularly for an hour or two. I love it, she's great to talk to and very uplifting.

    Unfortunately most of my healthcare team have little or no experience of MND. I'm certainly the only one here, so it's a learning curve for all of us. We do get support from the mainland but that's less hands on although my MND nurse coordinator is also really good. Infact I think in general I have a great team around me and am very grateful. Nothing happens quickly though. The joys of living in a small island, but even now I have no regrets.

    I do have a rise and recline chair which is very comfy for a while if I recline it, bring my knees up and let them splay out sideways propped up with cushions. I have attached dog collars just above both knees so that I can pull my knees up. They have ordered a Careflex chair for me. Just waiting for them to get a ferry booked, so looking forward to that coming. xx

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  • Ellie
    replied
    Originally posted by Susie View Post
    I have a hospital bed with a hybrid air mattress. I thought it would be the answer to all my problems relating to comfort but it's really not.
    Sue, I can say from personal experience that there's a significant difference between a hybrid and a full alternating air mattress. I had a hybrid mattress last time I was in respite but found it very uncomfortable and it definitely didn't provide enough pressure relief, marking an elbow and both heels, even though it's in the 'very high risk' mattress class. I had my pure alternating air mattress brought in from home!

    There is also a wide variance in quality, comfort and functionality in alternating air mattresses and we need one with adjustable firmness, proper air cells and an alternating cycle of not more than 10mins really. I cannot move at all in bed but sleep pain free and comfortably all night. I put a soft pillow under my knees to take drag off my lower back and to put a slight bend in my knees.

    If your mattress is not comfortable, ask for a better one. Sleep is sooo important for us, both mentally and physically.

    Originally posted by Susie View Post
    My biggest problem apart from not being able to stand or walk is that I'm never comfortable anywhere for long.
    Has your OT assessed your seating, provided cushions, a riser recliner armchair? I know you're getting a powerchair soon, that too needs to be made comfortable specific to your needs with seat cushion, backrest, armrest, leg rest and drive control. xx

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  • Susie
    replied
    I have very poor sleep these days, but that's because I'm so uncomfortable. I get woken by lower back or knee or leg pain. I struggle to move around at all once in bed. I have a hospital bed with a hybrid air mattress. I thought it would be the answer to all my problems relating to comfort but it's really not. My biggest problem apart from not being able to stand or walk is that I'm never comfortable anywhere for long.

    Fortunately I don't have any breathing problems yet.

    Still got an awful lot to be grateful for, but would be lovely to be comfy.

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  • Ellie
    replied
    Originally posted by Rosemary6NT View Post
    My oximeter readings in the morning are OK though.
    I'm *not* referring specifically to you Rosemary, it's a general general comment on Sats/SpO2.

    Unless you're on an overnight Sats monitor, you've no real way of knowing what your SpO2 (oxygen) levels are during the different phases of sleep. Sats levels naturally dip slightly during sleep and are also lower when one is lying down, double whammy when one has an MND, so it could be that achieving proper, good quality and refreshing sleep is an issue because low oxygen levels rouse you from sleep.

    Once respiratory function is affected, we're usually monitored overnight at home, using a fingertip monitor which records our Sats/SpO2 over an 8hr period in our own bed. Sometimes an inpatient, more in depth sleep study is done.

    Sometimes we think we're sleeping well and/or our Sats are OK but the 'Computer says No' 😏 xx

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  • matthew55
    replied
    When my grandfather was in his late nineties he only slept four hours a night. πŸ˜πŸ€—πŸ˜˜πŸ˜xx

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  • Mary C
    replied
    Hi all.I get off to sleep pretty well straight away.I wake every few hours for a sip of water as mouth so dry but no trouble getting back off to sleep.Thankfully I don’t lie awake overnight for any significant period.Don’t wake up with headaches .

    I do have a hour nap in the day time as get weary.Also it’s comfortable to sit in bed to read or watch tv .

    Most of my retirement age friends admit they don’t ever sleep through the night..several can’t get to sleep for hours..glad so far I feel I sleep fairly well.

    Best wishes for a good nights sleep.
    Mary

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  • Rosemary6NT
    replied
    Thanks Ellie Heather R and matthew55 makes sense unfortunately. My oximeter readings in the morning are OK though.

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  • Ellie
    replied
    Originally posted by Rosemary6NT View Post
    Is a good night’s sleep unusual with MND? I wake up about 3 times a night and often lie awake for hours but I thought that was just me...
    Def not just you Rosemary6NT !!

    Assuming you're not working out complicated bridge strategies πŸ˜‰ waking up isn't unusual because of stress/anxiety; not being able to quite get into a comfortable sleeping position; side effects from medication; weak breathing muscles preventing good quality sleep and stress/anxiety (mentioned twice for obvious reasons 😏)

    Many of us listen to podcasts, audiobooks, radio dramas, music etc to relax and nod off (BBC Sounds has a good mix) And there are numerous lotions and potions to try, as well as meds. If it's because you are uncomfortable, a different mattress and/or pillows and/or grab rails could help.

    If you find yourself waking up with headaches or being unusually groggy, that's a different kettle of fish...

    Love Ellie.

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  • Heather R
    replied
    Quite understandable if we have a worry to two to keep us awake at night, and also if your lungs are affected and you have difficulty breathing lying down, but otherwise don't know whether it's typical of MND or not. I wake about 3 times and sometimes can't get back to sleep too, and wouldn't know if this is how I'd be without mnd. Be good to sleep 8 hours straight through, wouldn't it?

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  • matthew55
    replied
    You're not alone

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