man in a barrel syndrome

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  • nunhead_man
    Forum Member
    • Jul 2017
    • 602

    man in a barrel syndrome

    Good morning

    I spotted this term on Facebook - "man in a barrel syndrome"

    I know I should not really be on Facebook, but there you are.

    When I queried that the person posting that used it, he was obviously taken aback a bit and check it out and then said, apparently it is something that consultants regularly used to describe somebody who has lost the use of both arms.

    I gave up at that point that was troubled enough by this to check here whether anybody knew if this was correct?

    Apart from anything else, of course, it is not only men that get motor neurone disease

    Best to all

    Andy
    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"
  • Ellie
    Forum Member
    • Oct 2012
    • 12428

    #2
    Hi Andy,

    Have to agree it is a horrible term to use

    Fortunately it's not something I have ever heard being used on this Forum or by anyone I've met in Clinics over the years.

    In MND terms, it'd mean someone had bilateral flail arm syndrome, with no other areas affected, which would be very rare indeed. It is a medical term which applies to non-MND conditions too, but seems callous and outdated to use nowadays.

    That Neurologist, like many others, could do with some lessons on How To Treat A Patient As A Person...

    Btw, nothing wrong with being on FB

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

    Comment

    • nunhead_man
      Forum Member
      • Jul 2017
      • 602

      #3
      Dear Ellie

      Originally posted by Ellie View Post
      Have to agree it is a horrible term to use
      Thank you

      Originally posted by Ellie View Post
      bilateral flail arm syndrome
      Ah! So that is the technical term

      From Mr Google I found this reference, which also mentions that insulting term in 2015;



      Best

      Andy
      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

      • mickmac
        Forum Member
        • Nov 2016
        • 41

        #4
        I also agree with the term being awful. I started mnd in one arm before it spread to the other. Also my neck muscles weakened so I would walk around with my arms very flat against my sides while looking down at my feet. My mnd nurse did mention the term to me but she also disapproved of a it.
        I do however understand why the term was used as that's exactly how I felt before I heard the term. I remember searching for the term and I think the term may have originated from polio patients who were in an iron lung. Looking at pictures I could see why it would be used in the past. I never got definite answers if this is how it originated however.

        Mick.

        Comment

        • nunhead_man
          Forum Member
          • Jul 2017
          • 602

          #5
          Good morning,

          Coming back to this after my recent visit to my own neurologist....

          Originally posted by Ellie View Post
          bilateral flail arm syndrome
          When asked, he offered the description "flail arm" without prompting - I knew he was one of the good guys!

          Let us hope this becomes more current in usage than it appears to be in the research community

          Warmly

          Andy
          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

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