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    #1

    I'm back

    Hi everyone. My partner encouraged me back on the forum because he says that if it wasn't for the forum members we would be lost.

    I have had great support from the hospice. They are now going to be our go between with some of the departments.

    The anti anxiety meds are so helpful. The good news is I saw a Facebook video of a man with mnd using a frame with wheels on front. My friend got me one and I'm out of my wheelchair in the house and using my frame. If only my ot or physio would've suggested it.

    I've got a to start niv as nighttime sats falling. I was upset but I also know what good it can bring.

    I will take the tips from you guys re breaking niv in gently.

    X
    Diagnosed May 2021 bulbar onset als.
    Tags: None
    • Likes 6
    #2
    Welcome back shelly21! It is so nice to see you back here! So pleased things seem to be improving for you and good luck with the NIV. x
    Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.
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      #3
      Glad you're back shelly.

      Xxx
      when i can think of something profound i will update this.
      • Likes 2

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        #4
        Welcome back Shelly. I found NIV very hard to get used to but now the gentle, rhythmic breathing is a great comfort and now sends me to sleep (night and day!)
        Diagnosed October 2020 - See my blog at https://www.myneurodiary.com
        • Likes 3

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          #5
          Lovely to see you back shelly21 xx
          • Likes 1

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            #6
            Glad to see you back Shelly.

            Your comment β€œIf only my ot or physio would've suggested it” really resonated with me. I’ve found more useful suggestions here than I’ve ever gotten from the so called professionals I’m involved with. This is a great group of people.
            Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.
            • Likes 4

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              #7
              Welcome back shelly21

              We missed you and your partner is right about how this forum helps.

              Glad the hospice is helping and getting you the help you need. Sounds like your OT isn't that clued up. It is really pot luck as some are great. x
              Diagnosed 3rd November 2021 Bulbar Onset
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                #8
                Welcome back lovely lady πŸ€—πŸ˜˜

                Originally posted by shelly21 View Post
                I have had great support from the hospice. They are now going to be our go between with some of the departments.
                Oh Shelly, that is music to my ears πŸ‘πŸ‘

                Re NIV: a comfortable mask is very important so, if you don't get on well with the first mask you're given, there are other types available. xx
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
                ​
                • Likes 4

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                  #9
                  Welcome back shelly21, it's good to hear some positive news about the support from the hospice and the frame. I hope it goes well with the NIV and you find it useful.
                  Claire
                  • Likes 1

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                    #10
                    Welcome back Shelly 😊😊😊
                    Foxes Never Quit πŸ’™
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                      #11
                      Good to see you back, although I've not been here much either xx
                      Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

                      Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!
                      • Likes 1

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                        #12
                        shelly21 nice to hear from you again, so glad the hospice was some help. Go at your speed with getting used to NIV, and hope you find it useful and comforting as I do x
                        Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!
                        • Likes 1

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                          #13
                          Keep positive, someone is always here x

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