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    The next day

    When we are well we laugh at the idea that every day is different but for us it is our existence. Yesterday I thought I was finishing as every breath was an effort (and very loud) and I'd forgotten how to swallow. I even asked my friend to call my family in the morning. I then slept for a personal best 8 hours and awoke to breathing normally (for me) and swallowing. It really is amazing the difference a day makes. 😀x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

    #2
    Great that your breathing and swallow are better today. A good sleep has helped by the sound of it, 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.

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      #3
      I've wondered if my swallow and what's left of my speech is affected by how much I've tried to use them during the day i.e. how tired I am.
      Each day is made easier with a bit of humour.

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        #4
        Originally posted by GaryM View Post
        I've wondered if my swallow and what's left of my speech is affected by how much I've tried to use them during the day i.e. how tired I am.
        For me, everything is affected by how tired I am. A good night's sleep on NIV and I feel like Superwoman for the day (relatively speaking)
        ​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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          #5
          I agree Ellie. Everything is dependent on sleep. If I am tired what is left of my speech is nonexistent and I feel lousy. A good sleep is so important and 8 hours straight must have done you good Matthew x

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            #6
            So glad you feel better today. Yes I find tiredness and stress make my voice worse. Savour the good times x
            Diagnosed July 2020, ALS bulbar onset.

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              #7
              Glad you're having a good day Matthew. Given that MND is progressive I can't fully understand the impact a good nights sleep has on how I feel both mentally and physically. Some days I can barely transfer to my wheelchair and I think I'm really progressing and then after a good night its no problem !

              I'm usually awake in the night so I'm going to ask at clinic next week about meds to help me sleep. I'm not sure they won't make me groggy, however.

              Hope you have another good sleep tonight Matthew,
              Love Debbie x

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                #8
                Originally posted by Deb View Post
                I'm usually awake in the night so I'm going to ask at clinic next week about meds to help me sleep.
                Sorry to hear that Debbie - is it something physical waking you up which might be fixable? x
                ​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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                  #9
                  I wake every night at least three times and spend lots of my time in bed not asleep. I get up about four hours after taking paracetamol before bed so that I can taken two more and go to the loo. Paracetamol doesn’t get rid of pain but the first three or four hours in bed it helps. The second lot doesn’t ease pain for very long at all (the longer I’m in bed the worse my pain) so the rest of every night is disturbed. I’m looking forward to my new adjustable bed this ought arrive in a couple of weeks, hoping that it’ll help. Lynne
                  Last edited by Lynne K; 4 May 2021, 15:46.
                  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.

                  Comment


                    #10
                    Originally posted by Ellie View Post
                    Sorry to hear that Debbie - is it something physical waking you up which might be fixable? x
                    Thanks Ellie... I think its to do with not being able to move and not wanting to disturb Stuart to move me. I get to sleep OK and can snooze happily in the morning. Im guessing I should have an air alternating mattress but we are reluctant to not sleep together. X

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                      #11
                      Originally posted by Lynne K View Post
                      I wake every night at least three times and spend lots of mine not aslant because of people. I get up about fourth hours after taking paracetamol before bed so that I can taken two more and go to the loo. Paracetamol doesn’t get rid of pain but the first three or four hours in bed it helps. The second lot doesn’t ease pain for long so the rest of every night is disturbed. I’m looking forward to my new adjustable bed this ought arrive in a couple of weeks, hoping that it’ll help. Lynne
                      So sorry you're in pain in the night Lynne.. as if life isn't hard enough. Being awake in the night is physically and mentally exhausting and its then we have our darkest thoughts. Fingers crossed that your new bed helps your sleep and it arrives soon x

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                        #12
                        Thanks Deb, 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.

                        Comment


                          #13
                          Originally posted by Deb View Post
                          Im guessing I should have an air alternating mattress but we are reluctant to not sleep together. X
                          I slept on an alternating air mattress on my 'half' of our double bed for a good while, it worked out well. I wasn't much higher than him as I didn't need the under mattress I need now for my hospital bed.

                          ​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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                            #14
                            Matthew, it is wonderful when something, such as sleep, gives us a reprieve and a chance to reset for at least a little while. X

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                              #15
                              Originally posted by Ellie View Post
                              I slept on an alternating air mattress on my 'half' of our double bed for a good while, it worked out well. I wasn't much higher than him as I didn't need the under mattress I need now for my hospital bed.
                              Thank you Ellie.. I've been looking ar these. My OT seemed to suggest I'd need a profiling bed for an air matress but this looks a better solution. 💤 x

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