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Knees can Barely Bend - What should I do?

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    Knees can Barely Bend - What should I do?

    Hello - I have severe spasticity in both legs. Meds have not helped. I just started PT, but the corona virus put an end to that for now. What kind of stretching or other exercises should I be doing to loosen and strengthen my legs? I also have clonus in both legs at times. Is there anything I can do about that? My cat won't sleep by me anymore because out of the blue my leg will start moving and disturbing his sleep (read not spoiled at all).

    #2
    Will the PT providers send you a print out of exercises you did and/or recommended exercises? I did PT for a knee injury and they sent me home with a print out with illustrations.

    It is hard to recommend exercises since often tailored to abilities. Mine were all focused on the knee and muscles leading to the knee.

    If you are able to stand, one exercise was to stand with hands on a table or chair for balance support. Lift one leg and attempt to bring heel towards rear end at a 90 degree angle. So lift it and bend as far as you can. It was 2 sets of 15 each leg, resting in between. If you can't stand, please don't try. I saw them do a sitting exercise with someone where their legs were extended from a straight back chair and then try to bring one leg in, bending as far as they could.
    Kathy
    DX 01/06, currently on Tysabri

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      #3
      Originally posted by gellexi View Post
      Hello - I have severe spasticity in both legs. Meds have not helped. I just started PT, but the corona virus put an end to that for now. What kind of stretching or other exercises should I be doing to loosen and strengthen my legs? I also have clonus in both legs at times. Is there anything I can do about that? My cat won't sleep by me anymore because out of the blue my leg will start moving and disturbing his sleep (read not spoiled at all).
      Hi gellexi!

      Do you have strength in your hands/arms enough to do some physical massaging or move your legs with your hands?

      If so, here is a helpful youtube (Reducing Extensor Spasticity, by The MS Gym).

      https://www.youtube.com/watch?v=n9H334KEOzo

      When I get spasticity in my legs, it is also the extensor type, whereby my legs go straight out.

      One time, when I was really sick with a virus, my sister (care helper) had one heckuva time trying to bend my leg - she couldn't believe how difficult it was!

      When I was still able to ride my bike, my leg would fly off of the pedal and stiffen straight out!

      I have to stretch and bend my legs daily, or I'm in extra big trouble with spasticity.

      gellexi are you able to stand or walk, if you don't mind my asking, thanks.
      PPMS for 22 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

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        #4
        Thank you, pennstater and Koko for responding. I am not able to stand at all; I get around in my wheelchair. However, I am able to use my hands and arms. If I want my legs to move, I have to pick them up and move them. I had a print-out of the exercises I'm to do, but managed to lose it already.

        The issue with my legs is that it's so hard to bend my knees. If necessary, my husband will carefully bend them for me, but it's getting harder to do that these days. Exercise, especially stretching, makes sense to me. Maybe it is extensor spasticity that I have, Koko. I'll have to check it out. I've never heard of The MS Gym before but video looks really interesting. Thank you for recommending it to me.

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          #5
          Originally posted by gellexi View Post
          Thank you, pennstater and Koko for responding. I am not able to stand at all; I get around in my wheelchair. However, I am able to use my hands and arms. If I want my legs to move, I have to pick them up and move them. I had a print-out of the exercises I'm to do, but managed to lose it already.

          The issue with my legs is that it's so hard to bend my knees. If necessary, my husband will carefully bend them for me, but it's getting harder to do that these days. Exercise, especially stretching, makes sense to me. Maybe it is extensor spasticity that I have, Koko. I'll have to check it out. I've never heard of The MS Gym before but video looks really interesting. Thank you for recommending it to me.
          Thanks for sharing your experience with us, gellexi.

          One thing I may not be interpreting right, though.

          Are your legs more difficult to straighten out, or more difficult to bend?

          If it's difficult to straighten your legs out (your knees want to stay bent), that would be flexor spasticity.

          If it's difficult to bend your legs at the knee (your leg wants to stay straightened out), that would be extensor spasticity.
          PPMS for 22 years (dx 1998)
          ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

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            #6
            It's almost impossible to bend my knees, extensor spasticity?

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              #7
              Originally posted by gellexi View Post
              It's almost impossible to bend my knees, extensor spasticity?
              Yes, that would be extensor spasticity.

              It must be difficult to keep your feet on your wheelchair foot rests, during those times when your knees won't bend very well.

              That would get frustrating!
              PPMS for 22 years (dx 1998)
              ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

              Comment


                #8
                I suffered with severe whole body spasticity until I was implanted with a "baclofen pump." It was nothing short of miracle for me. A number msworld members have them.

                I don't take it lightly when suggesting that someone consider a medical implant procedure, but based on what you have shared you are likely a candidate.

                Here's a link to the manufacturer's website:
                https://www.medtronic.com/us-en/pati...pasticity.html

                You can also do a forum search to learn more about our personal experiences with the treatment.

                I wish you well...

                Comment


                  #9
                  You're right Koko, I have to keep putting my feet back onto the foot rest when I'm wheeling around.
                  It is annoying, but it is what it is, as they say.

                  I don't have a Baclofen pump because Baclofen has never worked for me. And the idea of using a pump scares me a little.

                  Comment


                    #10
                    Originally posted by gellexi View Post
                    I don't have a Baclofen pump because Baclofen has never worked for me. And the idea of using a pump scares me a little.
                    I don't blame you for being skeptical, even somewhat afraid, of the baclofen pump. I was extremely hesitant about the idea, but my pump dramatically improved my quality of life. Something oral baclofen, tizanidine, muscle relaxers, or any other therapy never did. I went from 240 mg of oral baclofen to 0.034 mg via the pump.

                    I remember having so much spasticity that I could barely speak, was in a wheelchair, needed help cutting my food, being in constant pain, unable to use what strength that I had. The pump changed all of that, because once the spasticity was gone I was free.

                    I'm sorry if I'm coming across a little pushy, but I want to encourage you to at least learn more about the therapy. Little kids with cerebral palsy get them and it's life changing. I'm done... not another word about it.

                    I wish you well...

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                      #11
                      Have you tried cannabis?
                      The future depends on what you do today.- Gandhi

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                        #12
                        Thank you, Marco, for encouraging me to try the Baclofen pump. My neuro and I talked about it a couple of years ago. But we agreed that injecting a foreign body could be risky. I'll look for comments by people who have the pump to see if it would change my mind, but I don't think so. I don't understand. If Baclofen pills don't work at all, why would the pump work?

                        Boudreaux suggested cannabis. I hadn't thought about that. It might be worth a try; it's legal here in Maryland. Boudreaux, do you have any experience with cannabis for spasticity?

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                          #13
                          Originally posted by gellexi View Post
                          Boudreaux suggested cannabis. I hadn't thought about that. It might be worth a try; it's legal here in Maryland. Boudreaux, do you have any experience with cannabis for spasticity?
                          Itís not legal where I live. I definitely think you should give it a try.
                          The future depends on what you do today.- Gandhi

                          Comment


                            #14
                            Hi Gellixi,

                            I am sorry to hear about the issue with your knees.
                            I have had a baclofen Pump since 1999. not the same one lol

                            I understand your concern about the oral baclofen. It stopped working for me also. My spasticity issue was my right leg going into major spasms. When I was laying down, my right leg would spasm up to my chest.

                            As for your question on how the pump works better than oral baclofen, the pump is implanted (mine is on my right side) and then a catheter is put in the spinal cord.
                            This makes the liquid baclofen work better because it bypasses the stomach. So, I haven't had any side effects of the oral baclofen.

                            The liquid baclofen is dosed in mikagrams which are much less than miligrams. A mika gram is 1,000th of a milligram.

                            I wish you the best.
                            Take Care, Bob

                            Comment


                              #15
                              Originally posted by gellexi View Post
                              Thank you, Marco, for encouraging me to try the Baclofen pump. My neuro and I talked about it a couple of years ago. But we agreed that injecting a foreign body could be risky. I'll look for comments by people who have the pump to see if it would change my mind, but I don't think so. I don't understand. If Baclofen pills don't work at all, why would the pump work?
                              I saw dozens of doctors, many MS Specialists, and not one of them correctly diagnosed my severe spasticity. So there I am sitting in a wheelchair having a PM&R doctor telling me I should not be confined to a wheelchair that I had spent years in.

                              He told me if I got a pump it would change my life. Initially, I thought the guy was a quack. How could world renown MS Specialists miss spasticity? How could MS researchers miss spasticity? But, what if this guy was right? Guess what? He WAS right.

                              I still have a wheelchair and use it for specific instances, but I am not dependent upon it every waking moment. Do yourself a favor and find a good Physical Medicine and Rehabilitation (PM&R) physicians, also known as physiatrists, to assess you.

                              If you're a candidate, there's a trial to determine how your body could respond to a pump. It's like a pregnant woman getting an epidural injection then you wait for a few hours while the doctor evaluates you.

                              Why would a pump work when oral baclofen didn't?

                              It's a superior method of delivery. You ingest oral baclofen and it goes through the entire digestive system trying to deliver medication where it needs to go. The pump bypasses all that nonsense and delivers the medication exactly where it needs to be.

                              That not only has significantly better results, but with no side effects and just a fraction of the medication.

                              Here's a few examples that may help illustrate the point:

                              Have you ever taken a magnifying glass and burned an ant? Zaps the crap out of them, but the sun didn't get any closer or hotter. The difference was the magnifying glass focused the light directly on the poor little bigger.

                              Or think about a cut on your skin. How do you treat it? You certainly don't ingest 2 ounces of hydrocortisone cream hoping some will get to the cut. Nope, you put a dab of hydrocortisone directly on the cut. That's the same principle as the pump, the medication goes precisely where it needs to go.


                              Try the cannabis. What do you have to lose?
                              Attempt to get a baclofen trial dose. What do you have to lose?

                              There's a chance you can lose all of the spasticity and will then be encouraging other non-believers that there may be hope.

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