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    #16
    Originally posted by 502E79 View Post
    Hi Marco!

    I know that the post is from 2014, as is the link you provided. Can you tell us how the endurance is today? Maybe share your routines to get strength back etc.




    I am wondering how close to normal (pre-MS) you have come five years later. Or has MS gained a foothold outside of the spasticity relief?

    Jer
    My endurance today is much better than in 2014, or even 2018. Over the past few years my walking has improved as my leg strength is stronger. When I first got my pump I was mostly confined to a wheelchair so my muscles were on the decline. Fortunately, I still had enough leg strength to walk when I got my pump. Some people wait too long and use excess tone (spasticity, rigid legs) to ambulate and then struggle after the spasticity is removed.

    Before and after pump installation, I did physical therapy to help strengthen my legs. Now my only routine is to walk as best I can to maintain my legs. Pre-MS I was in the military so I was in top notch shape and 30 years younger. I'm definitely not the same person, but that was a lifetime ago.

    I still love, adore, and cherish my pump that has been such a blessing to me and my family. In about two years I will be getting a new pump as the batteries last about 7 years. Amazing how time flies by...

    I wish you well...

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      #17
      Originally posted by Marco View Post
      My endurance today is much better than... even 2018. ....my walking has improved as my leg strength is stronger... I did physical therapy to help strengthen my legs. Now my only routine is to walk as best I can to maintain my legs

      Marco, thank you very much for the quick response.

      Your exercise (my only routine is to walk as best as I can), is this because of time restraints? or maybe doctor advised??

      Guess I am asking if your physical drawbacks due to spasticity can be completely reversed with more strength etc. workouts?

      Do you think it is possible to return your legs back to pre-MS condition?

      Thanks again for your answer to what may well be a pipe dream question.

      Jer

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        #18
        Originally posted by 502E79 View Post
        Marco, thank you very much for the quick response.

        Your exercise (my only routine is to walk as best as I can), is this because of time restraints? or maybe doctor advised??

        Guess I am asking if your physical drawbacks due to spasticity can be completely reversed with more strength etc. workouts?

        Do you think it is possible to return your legs back to pre-MS condition?

        Thanks again for your answer to what may well be a pipe dream question.

        Jer
        Before the pump, my spasticity was fighting my muscles preventing them from operating normally. I remember when staggering/shuffling from the couch to the bathroom was a tremendous challenge.
        Without the spasticity my muscles operate normally. They can atrophy if I don't use them or improve if I actively use them.

        Before and after getting the pump, I've spent multitudes of hours working my legs and it's definitely paid off. My leg strength is no longer a limiting factor to my mobility. So I definitely believe it's possible to return your legs to pre-MS condition with a few caveats.

        My problem was virtually all spasticity so when that was removed it freed up my existing strength and allowed me to improve on my muscle quality. I have no idea if I could squat as much weight as before MS, but that's not something that would impact my quality of life.

        Heat, fatigue and other MS problems remain limiting factors. It's simply too hot for me to go to the gym or I would go and do other strengthening exercises. It's over 100 here so there's no way to try to walk outside. I walk from front to back door, turn around and do it again and again.

        It's not as mentally or spiritually as fulfilling as walking in nature, but it has it's advantages; I can take a break whenever necessary, it's cool, I have immediate help if necessary, in other words it's a controlled environment. I use to use the television as background noise, but it's just too much negativity. I now just listen to music and it's great for me even though it's just 7 strides back and forth.

        I do have a weighted backpack (20 lbs) that I occasionally use for additional strengthening. I can also start with stair steps when my legs are fresh. I could probably do them at the end, but as a previous fall risk it's just safer starting with more challenging things. I do wish I could go to the gym, but it is what it is.

        I hope that better addresses your concern, if not I will try again

        I wish you well..m

        Comment


          #19
          Originally posted by Marco View Post
          Before the pump, my spasticity was fighting my muscles preventing them from operating normally.
          Without the spasticity my muscles operate normally. They can atrophy if I don't use them or improve if I actively use them.
          I've spent multitudes of hours working my legs and it's definitely paid off. My leg strength is no longer a limiting factor to my mobility.
          So I definitely believe it's possible to return your legs to pre-MS condition with a few caveats.
          My problem was virtually all spasticity so when that was removed it freed up my existing strength and allowed me to improve on my muscle quality.
          Marco!

          I read your response again and again. I now totally understand your original comment regarding 99% improvement and take honest joy in what the bacolfen pump has meant to your life.

          My spasticity is extreme in entire right arm, also my walking ability (very noticiable in right leg), minor in left shoulder and non existent in left leg. The possibility that a normal arm & leg is possible, I'm speechless.

          I get by and consistently do stretching, weight bearing and cardio exercise. Also feel very fortunate that I have no heat intolerance although cold does effect my spasticity. And no other MS related issues that I am aware of....

          I cannot say how grateful it was to hear you state that removing spasticity allowed you to bring muscle (with work of course!) back to near nomal, well I was over the moon!

          I'm not sure at this time if I am a candidate for a pump. Not as severe as you (others) have faced, but find true peace in the knowledge that the continued effort made regarding exercise, even painful stretching exercise, can be rewarded with this procedure.

          Thanks very much Marco. I will print your response and pass on to my trainer. She will be inspired to hear that continued effort can reap such a harvest!

          Jer

          Comment


            #20
            pump candidate or ?

            Originally posted by 502E79 View Post
            My spasticity is extreme in entire right arm, also my walking ability (very noticiable in right leg), minor in left shoulder and non existent in left leg. The possibility that a normal arm & leg is possible, I'm speechless.
            Marco,

            Just wanted to pass along that I followed up with my trainer and she was immediately on me to bring it up, at the very least for additional info / comment with my Neuro. Since a visit last week was scheduled , I did.

            Neuro responded with surprise and stated that I'm no where near to being a candidate! Now I was surprised and happy I guess.

            He said something along the lines of it is way too early to consider such a treatment. Funny that he said the exact opposite 11 years ago at his RRMS dx... You need to immediately go on a DMT!

            Anyhow, he was apparently jogged enough by my question that he did a far more extensive "hands on" exam than he has done , well in 11 years. Now he appeared surprised. My right spastic hemiparesis, my lack of ability to do his simplest request, well you could hear him thinking this is worse than I thought. Maybe he will look at my non complaining differently. I've resigned myself to PPMS a long time ago even when he said RRMS 11 years ago.

            He did manage to get me to agree to a few botox injections to ease my rigid right arm. Two weeks from now. We will see.

            Guess I'm happy yet a bit disappointed. I will continue as best as any of us can.

            And I'm glad that reading your response to my queries lead to a more fruitful discussion with the neuro, and not the usual "dog and pony" show. Thanks again!

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