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    Morning all....was awake at stupid O'clock (4am)....however determined to go back to sleep...so got up 9ish😎
    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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      LindaB Morning all. Glad that you could get back to sleep Linda xx
      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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        Good morning xx

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          I slept on my riser recliner last night and got 5+ hours sleep . No panics about breathing either. I always end up sliding and slouching in my hospital bed which results in poor breathing. I have a mattress with a pump that gradually pulls me down the bed and is even more uncomfortable than the foam one! It has to go!
          Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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            Rosemary6NT Glad that at least you found a temporary solution to your poor mattress, and managed some sleep in your RR chair. I hope that your mattress can be changed quickly xx
            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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              Originally posted by Rosemary6NT View Post
              I slept on my riser recliner last night and got 5+ hours sleep . No panics about breathing either. I always end up sliding and slouching in my hospital bed which results in poor breathing. I have a mattress with a pump that gradually pulls me down the bed and is even more uncomfortable than the foam one! It has to go!
              Sounds awful...hope you get this changed asap....sleep so important xx
              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                Happy Windsday, as Pooh Bear would say 😘😘😘
                ​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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                  Gordan1111 Ah, I see, thanks 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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                    Originally posted by Rosemary6NT View Post
                    I have a mattress with a pump that gradually pulls me down the bed
                    Rosemary, please don't give up! I earned the nickname Goldilocks for a reason πŸ˜‰ There are other air mattresses out there to try, even though I know you're fed up with the whole bed situation.

                    Just a thought: I find that I have to get into my hospital bed with my head right up to the headboard (once the head is raised your head isn't touching the headboard) so, when I'm getting into bed, my bottom is quite close to the pillow, much closer than one would naturally think.

                    When the back of the bed is raised, if I'm too low in the bed, I will slide down because the 'bend' in the bed is in the wrong place. When my body is high up in the bed, I don't slip down.

                    Also, some mattresses have zones and, similar to the bed scenario, if you're too high or too low, you can move.

                    Why we're not told these things on taking delivery of these items baffles me... I found out through trial and error. 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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                      Rosemary6NT . Oh goodness I hope you don't have to wait too long for a solution and that Ellie's tips are a help. Its a really long night when you're not comfortable xxπŸ˜˜πŸ€—

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                        Morning everyone. I'm still in bed contemplating getting up. Sunshine would be great but it looks dull damp and miserable. Need a nice bowl of porridge. Xxx
                        when i can think of something profound i will update this.

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                          Good morning
                          I am up and sitting in my boxers with a coffee
                          I have to get socks on today as I am out tonight
                          It's all funny

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                            I hope you will be wearing more than boxers and socks keno! 😳
                            when i can think of something profound i will update this.

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                              Originally posted by denise View Post
                              I hope you will be wearing more than boxers and socks keno! 😳
                              Dressed now plus fed and watered.
                              the more sleep I get the harder the morning routine seems
                              It's all funny

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                                Morning Denise, Keno and all. I hope that you have a great night tonight Keno.

                                I’m showered (independently, harder and harder and Steve didn’t join me as agreed) and dressed (Steve did most). Now sitting on my RR chair by the window looking on a dull but dry day xx
                                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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