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    #1

    Pre-Christmas update

    Sorry for my absence for a while but we seem to have been really busy coping with the day to day.

    Not a happy week here as we are waiting to find out if our daughter's housemate has Covid - also if my brother, coming back from Italy tomorrow, will be in any fit state to join us.

    Concerning my MND, we have 4 issues at the moment including a wheelchair that hurts me when I sit in it, a shower chair that is supposed to go over the Closomat but does not, a problem with getting out of bed despite our new profiling bed which raises me up to vertical to sitting but still needs my wife to pull me up a bit which hurts her back and finally a need to really sort out my technology because it's not working for me at the moment.

    Don't get me wrong, we have some support for all of this but it is frustrating having to deal with so many different people and it being a real management job which I really should not have to do.

    As to my development of MND, I'm still walking with some help and am seeing the respiratory team for one of my 6 monthly visits on Weds to check out my breathing, where I do seem to be getting short of breath as I become more and more unfit. Blood oxygen level still good.

    Hope you are all doing as well as you can?
    Warmly


    Andy

    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – 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"
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    #2
    Sorry for your woes. Try and enjoy what you can. 😁🙏👍🤗xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx
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      #3
      Originally posted by nunhead_man View Post
      we have 4 issues at the moment including a wheelchair that hurts me when I sit in it
      Have you contacted Wheelchair Services and/or your OT to improve things since you last posted about this issue?

      If you did, what did they do? xx
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
      ​
      • Likes 1

      Comment

        #4
        Thank you Matthew.
        I do try and enjoy myself when I can. I have quite a few laughs with my dear wife.
        Originally posted by matthew55 View Post
        Sorry for your woes. Try and enjoy what you can. 😁🙏👍🤗xx
        Warmly


        Andy

        ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – 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

          #5
          Hi Ellie

          The wheelchair issue has been going on since April this year. The latest episode involved a visit where Millbrook who run the wheelchair services realised I had simply been given what they thought I needed rather than asking me. So two things came out of that meeting two or three weeks ago;

          1) a diagnosis of the problem with my seat cushion which they promised to fix but have not been back with that solution yet

          2) a represcription of my powered wheelchair with an 8 week turnaround (I hope!) before we get George IV!

          George I - off the peg, ill-fitting manual wheelchair
          George II - powered wheelchair as described above
          George III - privately purchased manual wheelchair which fits me a lot better than GI



          Originally posted by Ellie View Post
          Have you contacted Wheelchair Services and/or your OT to improve things since you last posted about this issue?

          If you did, what did they do? xx
          Warmly


          Andy

          ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – 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

            #6
            Originally posted by nunhead_man View Post
            1) a diagnosis of the problem with my seat cushion which they promised to fix but have not been back with that solution yet

            2) a represcription of my powered wheelchair with an 8 week turnaround
            What is the problem with the seat cushion and how is it being fixed?

            Which powerchair are you getting and do you think it's right for you?

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

            Comment

              #7
              Hi Ellie - thank you for your care.

              The seat cushion (a Jay cushion if that means anything to you?) has a gel insert which seems to allow one of my legs to press harder at the front of the cushion than the other causing the issue.

              I think what Millbrook are doing is providing some sort of an insert to level this out.

              My chair is a Quickie Q400 which seems fine for me as it has quite a long range and turns on a sixpence. I will of course need attendant control for when I can no longer operate the joystick and is included in my prescription as is the current one together with a 'riser recliner' function which we are paying for.
              Warmly


              Andy

              ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – 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

                #8
                Originally posted by nunhead_man View Post
                a Jay cushion if that means anything to you?
                Indeed it does. I have always had Jay cushions with gel inserts and find them excellent (not a hint of pressure areas or pain in 14 years)

                Originally posted by nunhead_man View Post
                a 'riser recliner' function which we are paying for.
                Do you mean a function which raises the seat height, a 'tilt in space' function and/or a seatback which reclines? You don't have to pay for the last 2 options, the 1st option is very dependent on your assessor and/or postcode. xx
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
                ​

                Comment

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