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    Dvt

    Anybody had clots in the legs from immobility? I have a big clot in my right leg which is quite swollen, and have been prescribed Eliquis 5mg to get rid of it. Seems like I will have to take this long term. I already have massage once a week and she spends a bit of time on my legs, but hasn't helped it seems. I'm told to walk more, but no falls with the blood thinners. Walking more brings more risk of falling, so that is out I'm afraid. Any tips? Thanks for reading.

    #2
    Hmmm, I wonder if a floor pedal exercise machine would be an adequate swap for walking? Certainly safer! Worth asking your Dr. xx

    Floor pedal machine.jpg
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user
    .
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      #3
      Gosh Ellie, I have one of those in the garage, I forgot all about it. I'll dig it out for sure, many thanks. It should get those muscles pumping ....

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        #4
        Hi ,
        I often wonder what other health problems will be caused by immobility.I do exercise my legs but no longer can walk.Sitting all day is not good for anyone.I do change position and stand up and try and march on the spot at regular intervals.
        Throughout adult life I tried to eat healthy and went for walks etc but now I am reduced to sitting down or lying down interspersed with changing position and a few exercises .
        The foot pedal looks like it might be worth an try for me.
        Best wishes
        Mary

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          #5
          Originally posted by aussiegirl View Post
          I have one of those in the garage, I forgot all about it.
          😍😍😍😍

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

          Comment


            #6
            Originally posted by Mary C View Post
            The foot pedal looks like it might be worth an try for me.
            Mary, if you do buy one, avoid the cheaper, lightweight ones which can move easily and wobble. Maybe a Christmas present?

            The majority have 'variable resistance', meaning you can tighten or loosen the pedalling experience, which is what you want. The counting gizmos aren't that important.

            They are handy things to have - cycle away watching a soap, news or whatever takes your fancy. Just don't hide it in the garage πŸ€­πŸ˜‰πŸ˜„

            Love Ellie.

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

            Comment


              #7
              Well I guess I have missed out on getting Covid so maybe I will get lucky and have my heart stopped by a clot! πŸ˜‰πŸ˜‚πŸ€—πŸ˜xx
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                #8
                Hi aussiegirl . That sound like a no win.. walk more but don't fall !

                I had bilateral pulmonary embolisms following a bad fall resulting in a broken leg 2 years ago.. My GP realised talking to my husband that my sudden breathlessness was not because of MND and it was treared as an emergency. Initially I was on injections but now I take a blood thinning tablet every day. I have regular blood tests to check the levels are OK. I feel safer on tablets but that might just be me ! I was reassured by the respiratory consultant at clinic that I was unlikely to develop another lung clot whilst on the tablets and it was safe to fly. ( famous last words !)

                Love Debbie x

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                  #9
                  Originally posted by Ellie View Post
                  Just don't hide it in the garage πŸ€­πŸ˜‰πŸ˜„

                  Love Ellie.
                  Ellie Good one!

                  matthew55 I was told a piece could go to my lungs, and not be able to breathe. After the choking episodes I have had, not a good way to go!

                  Deb That sounds scary, glad it is managed well now. Flying again is but a dream.

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                    #10
                    Anyway is not a good way but I get what you mean. For me anyway is the best way! πŸ˜‰πŸ€—πŸ˜˜πŸ˜xx
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                      #11
                      Originally posted by Ellie View Post
                      Hmmm, I wonder if a floor pedal exercise machine would be an adequate swap for walking? Certainly safer! Worth asking your Dr. xx

                      Floor pedal machine.jpg
                      Suddenly remembered I bought one of those...time to dust off the cobwebs....πŸ‘πŸ˜‡
                      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                        #12
                        Originally posted by LindaB View Post
                        Suddenly remembered I bought one of those...time to dust off the cobwebs....
                        You too πŸ˜²πŸ™„ 😍😍😘

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

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                          #13
                          I’ve got a decent floor peddler. Heavy to move though. It could do with a handle on as it’s very awkward moving it in and out of it’s working space in front of my RR chair 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.

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                          • Sorry to hear about the blood clots. As someone who has lived in a bed for 9 years, I know it is possible. But I limit my food intake and don't follow MNDA advice to eat highly calorific food.

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