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VO2 13.0 (mL/min)/kg

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    VO2 13.0 (mL/min)/kg

    Interesting call from Neurology Department asking how I felt I have got on and could I email it before my next appointment.

    I wonder if it means they have lost all their notes.

    Interesting when one looks back and you actually read what people have said.

    "VO2 13.0 (mL/min)/kg ,indicating impaired oxygen delivery and extraction"

    Looking at the charts that half the lowest of the low. That was back at the start of the year.

    How does that compare with others?


    #2
    I’ve never asked to look at my medical notes, don’t think anyone has measured much. X
    Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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      #3
      Originally posted by Christopher View Post
      How does that compare with others?
      Given that it hasn't been possible for me to do a VO2 test since 2007, I'd say you compare rather favourably to me 😉😋
      ​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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        #4
        Originally posted by Ellie View Post

        Given that it hasn't been possible for me to do a VO2 test since 2007, I'd say you compare rather favourably to me 😉😋
        Only found it when looking through old notes.

        It was interesting that then found a paper looking at seeing if exercise would help ALS outcomes. All the ALS suffers entering the study had VO2 very close the the 13.0 (mL/min)/kg

        I won't comment on what it is for people who aren't part of out wonderful club. You can see the charts out there.

        Ah but Ellie surely they can work it from your active mind?

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          #5
          Christopher I dont know what the measurement difference is but my forced vital capacity test at respiratory clinic in august was 72%. Not sure how that compares. And of the exercise I got told by neuro physio and consultant that exercise cant slow mnd down but that exercising keeps the muscles not yet affected by mnd stronger so they can compensate more and so you maintain mobile for longer. I am continuing to exercise daily but within reason as tire quicker now. And falls to be mindful of! x
          Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.

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            #6
            Originally posted by Zante View Post
            I dont know what the measurement difference is but my forced vital capacity test at respiratory clinic in august was 72%.
            They are different tests Zante.

            The VO2 test measures how much oxygen is used as one exercises, often on a treadmill or bike, or just walking. xx
            ​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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              #7
              Ellie ok cheers. I got that very wrong!! Saw the oxygen part and thought I knew what I was talking about! I do know i now get out of breath more often. xx
              Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.

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                #8
                Zante Ellie

                Yes mine was on a bike.

                Also at Zante remember that the knowledge that the Neuro Physio and Neurologist only comes from the papers they have read.

                Some don't go to the meetings where the latest studies are being presented.

                My Neuro Physio who comes to the house said there is no physio we can do (but she is lovely to chat to).

                That doesn't stop me trying to move my feet down so I can push.

                If blood vessels becomes blocked then you can get collaterals growing (just like if you block a stream, the water has to go somewhere).

                I remember the day as a child when I learnt how to turn my tongue over. I has seen a girl in class doing it. I managed it a few days after sat in the back of my parents pink Renault Four.

                When my mother was at school she was told by her teachers that only rabbits can move their ears. So she taught herself to do it. She told me the story and therefore its something I learnt to do. I have to be very relaxed and close my eyes. Dont know if I can do it now.

                My son wanting to do deep free diving and so had to each himself to hold his breath for five minutes or so. He would lay on his bed training himself to relax.

                Its amazing what the body can overcome as so many people on this site have shown.
                Lets all keep fighting
                big loves to all
                xxxxx

                Comment


                  #9
                  Originally posted by Christopher View Post
                  ... remember that the knowledge that the Neuro Physio and Neurologist only comes from the papers they have read.
                  🤔 I should hope not!!


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

                  Comment


                    #10
                    I get all of the notes in my records. This ensures that I can go mobile with my treatment if I need, and keeps the provider honest because I can read what he says about me. I have had a few disputes, win some, rarely lose, and others get ignored, but...

                    I stay on top of my care. Remember, you are your own best advocate when it comes to health care.

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