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    Good morning everyone. What Linda said. πŸ˜€
    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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      Originally posted by LindaB View Post
      Morning everyone. Have the best day possible🌞🌞

      keno hope you're less sore today..🚿

      Lynne K hoping all is well and you'll soon be out of hospitalπŸ™πŸ’™
      Thanks 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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        I contacted my mnd nurse about needing help to keep clean etc so she is now on the case.
        the fall has knocked some sense into me
        It's all funny

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          Good morning all 😘😘

          Had a few gaspy episodes during the night but went back asleep πŸ‘πŸ‘

          🌞🌞πŸ₯ΆπŸ₯Ά today and I hear we're in for even colder weather and some places are in for snow and ice over the next few days, so take care. xx
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user
          .
          ​

          Comment


            Originally posted by keno View Post
            the fall has knocked some sense into me
            It's a hard lesson to learn Ken but one we've all learned!

            I was thinking that maybe your friend or nephew could pick up up a little stool/seat for the shower as it might be a week or so before the nurse/OT sorts one out. They're cheap enough and widely available (Argos to Amazon) xx
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user
            .
            ​

            Comment


              Originally posted by Ellie View Post
              It's a hard lesson to learn Ken but one we've all learned!

              I was thinking that maybe your friend or nephew could pick up up a little stool/seat for the shower as it might be a week or so before the nurse/OT sorts one out. They're cheap enough and widely available (Argos to Amazon) xx
              I have one but can't get up off it because the grab handles are too high
              It's all funny

              Comment


                Good morning my fellow cave dwellers. We made it to another Friday. I'll drink to that. 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

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                  good morning
                  It's all funny

                  Comment


                    Morning everyone. We had a fall back in January. I tried to help Stephen from a kneeling position and it resulted in us both falling. Now have a painful hip and knee and Stephen is fine. πŸ™„ Strange in that it took 2 weeks to become really painful.
                    the sun is out its beautiful here and the back door is open. Just hope that squirrel doesn't nip in and pinch the cat food.
                    when i can think of something profound i will update this.

                    Comment


                      Morning campers...sun is shining brightly & the frost is sparkling.

                      Have a good one 🌞🌞🌞🌞
                      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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                        after the fall my mnd nurse referred me to all sorts of services and the district nurse rang this morning to say they would come to me to take blood instead of me going to surgery.
                        I had to get in the shower today and was so scared but survived in the end.
                        It's all funny

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                          keno that's a relief that they'll come to you for blood tests. I use a bath swivel seat for showers (I've got a shower over my tub) could you use? My OT from the hospice team ordered for me.
                          πŸ€—
                          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.​​​​​​

                          Comment


                            Afternoon all 😘😘

                            The frost has disappeared, but so has the 🌞😟

                            Good sleep, good coffee, good friends dropped in, good times πŸ‘πŸ‘
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user
                            .
                            ​

                            Comment


                              Originally posted by LindaB View Post
                              keno that's a relief that they'll come to you for blood tests. I use a bath swivel seat for showers (I've got a shower over my tub) could you use? My OT from the hospice team ordered for me.
                              πŸ€—
                              small bathroom. just shower, toilet and washbasin
                              It's all funny

                              Comment


                                good morning all
                                It's all funny

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