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    Unbelievable

    I forgot to say yesterday that on Wednesday night I actually slept for eight uninterrupted hours! Naturally last night I was back to waking every hour, but not by pain. My bat like super hearing can hear a dog fart on the other side of town in the dead of the night. πŸ¦‡πŸŒƒπŸ˜΄πŸ˜xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    Excellent. Let's count all those small victories.
    Hi, I'm Eddie.
    Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
    Still walking and talking, and wondering what the future will bring.

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      #3
      Glad that you at least have the occasional 8 hours sleep Mathew 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.

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        #4
        That was the first since symptoms began. We all deserve honours for living like this. πŸŽ–οΈπŸ₯‚πŸ˜˜πŸ˜xx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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          #5
          Your ears are too clean πŸ˜‰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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            #6
            Woo 8 hours! do you know what made the difference? x
            Diagnosed July 2020, ALS bulbar onset.

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              #7
              Probably counting sheepskins πŸ˜‰πŸ€­πŸ€­πŸ˜˜
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              ​

              Comment


                #8
                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...

                Comment


                  #9
                  You're not alone
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                    #10
                    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?
                    Diagnosed July 2020, ALS bulbar onset.

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                      #11
                      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.
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      ​

                      Comment


                        #12
                        Thanks Ellie Heather R and matthew55 makes sense unfortunately. My oximeter readings in the morning are OK though.

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                          #13
                          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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                            #14
                            When my grandfather was in his late nineties he only slept four hours a night. πŸ˜πŸ€—πŸ˜˜πŸ˜xx
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                            Comment


                              #15
                              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
                              ​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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