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Our Update on 19 August 2021

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    Our Update on 19 August 2021

    Another day, another issue,

    So my ears have been getting bunged up on the eustachian tube side and so lo and behold I fell over again on Monday requiring an ambulance crew to help my wife sort out the lifting device we have because she could not get me onto it where I was lying. Now onto trying to get my ear tubes clear and being careful in the meantime

    In other news we are finally getting the last bits of our house sorted out with carpet for the bedroom and seeing our occupational therapist again to talk about how I'm being got out of bed because if we are not careful I end up with a sore elbow due to the lack of musculature.

    We are slowly getting used to life with a push wheelchair having made it to our optician by parking in a nearby disabled bay (having moved on the taxi that was illegally parked there) and my SO carefully pulling me and not pushing me to the shop.

    We are going to see if a better push wheelchair would be any help in the short-term while we wait for an electric wheelchair for which in turn we will need a new car. Our local spies tell us that there is an oversupply of second-hand WAV vehicles which does indeed seem to be the case. So it looks like we are back to owning second-hand cars again which we had moved away from perhaps 7 or 8 years ago. Joys of finding a reliable garage et cetera et cetera.

    Following the AGM, I enter my 3rd and final year of this term of being a trustee of the Association and am wondering whether to stand for election since I remain the only person on the trustee body living with MND

    Hope all are doing well here
    Warmly


    Andy

    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

    "Things turn out the best for people who make the best of the way things turn out"

    #2
    Sorry about your fall Andy. I hope that you weren’t too sore afterwards.

    Good luck for your wheelchair issues and WAV.

    It’s smashing about you being a Trustee. Good luck with this too.

    Love 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


      #3
      Keep on trucking Andy you are an example for all of us. 👍😁🙏🕯️xx
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

      Comment


        #4
        Stick with it Andy

        Comment


          #5
          Be very careful moving into a wheelchair. It is a two person job, as you have just found out. We don't want another Barry.

          Take care.
          Copyright Graham

          Comment


            #6
            Good afternoon,

            Thank you for your good wishes and encouragement.

            At the moment, I can move into my wheelchair from the car seat for example by standing up wobbling over to it and sitting down

            Obviously, as I progress, I may need more help.

            And I hope I can count all of you to vote for me when the time rolls around next year.
            Warmly


            Andy

            ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

            "Things turn out the best for people who make the best of the way things turn out"

            Comment


              #7
              Remind us Andy and I will definitely vote for you.

              just like to point out you can get home visits from opticians either through nhs or Specsavers. Which I'm going to arrange for both of us.

              not many WAV vehicles in the south west. 😐

              Comment

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