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Hi, I’m Sue

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    Hi, I’m Sue

    Just thought I’d say hello.
    My official diagnosis date was 10th Feb 2021, although I was told by GP and consultant just before Christmas 2020 that they thought it was MND.
    Mine started in the right leg and I am now permanently in a wheelchair and cannot walk or stand. Transfers are becoming difficult.
    My body is failing me, but I cope by not letting my happy, smiley personality desert me.

    #2
    Welcome Sue
    It's all funny

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      #3
      Hiya Sue, and a warm welcome to a club no-one wants to be a member of.
      I only joined a couple of weeks ago. We are all here for each other.
      *Hugs*
      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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        #4
        Welcome Susie & welcome to the forum. Lots of good people on here with sound advice & support.
        Look forward to reading your posts and getting to know you.
        🤗😉
        Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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          #5
          Susie welcome here. Lots of friendly people here, advice, sharing tips and listening ears when we all need that. Love Lynne 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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            #6
            Warmest welcome Susie may I say you seem to have a very important weapon in your arsenal. Positive Mental Attitude. Personally I take what I call happy pills. I loved prozac until they discovered it was damaging my heart! Well done for joining the nicest bunch of people you will ever find online. Stay Strong and Stay Sane. 💪👀💐😁xx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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              #7
              Susie A warm welcome to the forum Sue, thanks for posting.

              Has your OT assessed you yet and provided equipment to make it easier and safer to transfer?

              Originally posted by Susie View Post
              My body is failing me, but I cope by not letting my happy, smiley personality desert me.
              Brilliant attitude Sue, it will count for more than you know 👍👍

              Love Ellie, a fellow smiler 😘

              ​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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                #8
                Susie
                Welcome to the forum.Hope you get advise on transfers via OT.There is equipment that might help you.Looking forward to hearing more from you.
                Best wishes
                Mary

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                  #9
                  Welcome ie

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                    #10
                    Hello Sue and a warm welcome to the forum from me.

                    I'm so sorry for your diagnosis but I'm glad you've found us as the forum is a good place for friendship and support. ( and we have laughs too !)

                    Its lovely to hear you are keeping your upbeat and positive attitude to life. I try to be happy and smiley too although i do allow myself the very occasional down day... usually a duvet day !!

                    Take care of yourself and I look forward to hearing from you again,
                    Love Debbie x

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                      #11
                      Susie Hi Sue, welcome. Sorry for your diagnosis. I’m fairly new here but it is a very friendly and informative group.

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                        #12
                        Thanks for the warm welcome everyone. I am getting lots of help from OT. They’re amazing, but we’re struggling to keep up with my mobility changes which seem to be happening quite rapidly over the last couple of months.
                        I’m really excited to be getting my powered wheelchair at the beginning of December which will mean I can get a WAV which will make life so much easier as I can no longer transfer into our car.

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                          #13
                          Originally posted by Susie View Post
                          I’m really excited to be getting my powered wheelchair at the beginning of December
                          Bet you never thought you'd say that Sue 😏😉🤗😘

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

                          Comment


                            #14
                            Ellie, you're so right there.
                            On Thursday OT brought me a Stand Assist to help with transfers. We managed to use it successfully while they were here. We felt elated and relieved. However on Friday we tried to use it to get me into the shower chair and failed miserably. Both feet kept lifting off the footplate and I was left dangling very uncomfortably. After several tries, we had to give up and go back to the handling belt and Mark physically lifting me from the wheelchair to the shower chair. We felt really down all day, which is unusual as we are normally very resilient and cheerful. Today we try again so fingers crossed, but no idea what we were doing wrong. 🤞🤞🤞

                            Comment


                              #15
                              About powered wheelcchairs. I recently made an extreemely small investment in Fredon One Life. They have completely redesigned a powered wheelchair, with a large battery, which is getting great reviews. Probably expensive, but worth looking at. I believe they said the battery lasts longer than in others
                              https://freedomonelife.com/
                              Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.

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