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    #16
    As slowly as you must, keep at it. There are machines which may be easier for you. Find them. I stared with 5 minutes due to the pain.

    Also, regarding pain. Go get Jon Kabat Zinn's "Meditation for pain relief". It's a 30 year-old proven program used in hospitals.

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      #17
      "Just try something, you will be surprised"

      I have been surprised at the way doing even small amounts of exercise makes me more exhausted. Maybe it's a progressive ms thing. Maybe it's an "everyone is different" thing. One thing is certain. Doing exercise doesn't seems to make any difference for me physically except make me feel bad.

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        #18
        Originally posted by whatismyname View Post
        "Just try something, you will be surprised"

        I have been surprised at the way doing even small amounts of exercise makes me more exhausted. Maybe it's a progressive ms thing. Maybe it's an "everyone is different" thing. One thing is certain. Doing exercise doesn't seems to make any difference for me physically except make me feel bad.
        Exercise can initially make many feel more exhausted as well as dealing with more pain. Given time this should decrease.

        The majority of those with MS can and should do some form of exercise. What "exercises" someone can do is based on their limitations and abilities.

        You can exercise from a wheelchair or even a bed. There are things you can do just sitting and watching TV.

        Exercise does not have to be strenuous or for long periods of time. Doing exercise for just a few minutes at a time and working your way up from those few minutes once a day to a few minutes two, three times a day can make a difference.

        No one, especially with MS, is going to see any benefits right away. It takes time, effort, frustration and patience.

        Exercise or working with a Physical Therapist is not a quick fix but a lifestyle change, something that needs to be continued for the rest of your life.

        If I had thought the way you do, if I had said I can't, if I had simply stopped trying, I would have been in a wheelchair at the age of 24...shortly after my diagnosis. No doubt about it.
        Diagnosed 1984
        “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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          #19
          Originally posted by SNOOPY View Post
          If I had thought the way you do, if I had said I can't, if I had simply stopped trying, I would have been in a wheelchair at the age of 24...shortly after my diagnosis. No doubt about it.
          interesting name choice "snoopy". i don't remember that carefree, lovable dog heaping guilt on people. i was right there w/ you until that last sentence. u don't know me or what has led me to "think the way i do". maybe it comes after 10 years of exercising on rotary bikes, weight training, leg lifts, physical therapist routines, standing up and sitting down 100 extra times a day, and more. maybe after all that my body still fatigues at the same rate, w/ other symptoms progressing steady, etc. i can't see the benefit any of that has done. i feel i would be in the same place had i not done any of it at all.

          it feels REALLY good not to wear myself out now. i encourage everyone to exercise. if it works for you keep at it and be as healthy as possible. saying "exercising is pointless, don't bother" is silly advice. but for me, right now, exercising is not something i will be doing nor for the foreseeable future. and it's people like you, that throw their own expectations at me w/o even knowing my situation that make things more difficult that they already are.

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            #20
            whatismyname

            You can take what I said any way you want.

            However, my intention was not to "heap guilt" on anyone nor am I going to assume knowledge of anyone's abilities or disabilities.

            exercising is not something i will be doing nor for the foreseeable future.
            And that is your choice.

            Quite simply I want to maintain muscle for as long as I can. If I need to transfer I want to try and do so on my own for as long as possible.

            Simple things like gentle stretching can help with spasticity, pain and range of motion which I feel is important regardless of what stage of MS I may be in. Anything I can do to keep my core strength is important.

            Choices others make about their health and exercising is their own business and in the end, I personally do not care what choices someone else may make.
            Diagnosed 1984
            “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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              #21
              Originally posted by SNOOPY View Post


              What's the point? Self satisfaction and a sense of "doing something" to fight this disease.
              If you gain nothing else from exercise you will probably feel some sense of control.

              You will probably get stronger for a while then suffer some set backs then have to fight to regain lost ground.
              It is a cycle to stay at peak performance. Not much different than an elite athlete.

              ( funny, I have been training for years and I don't feel like an Olympian. Perhaps Old Limping Man is closer?) On the bright side; I am still moving.

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                #22
                Working out makes some of my issues worse. Pain is a big one for me. But I will not stop as long as I am able, and I hope that is for decades, or forever. I would rather be in pain than let this disease take something else from me. I have always worked out and been fit. It is a fundamental part of who I am.

                It is not easy. I am still trying to find better balance in how I work out. I work out in the mornings, before the day does its damage and I am close to useless. I do less, and don't do certain things at all, but I don't not push myself, either. I feel so good while I am doing it. I feel like me.

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                  #23
                  I hope not to offend anyone with this, but this article from today's New York Times about the brain's role in exercise-related exhaustion might be interesting to some. (It also might not fully apply to people with MS.) It definitely applies to me, pre- and post-MS diagnosis.

                  http://well.blogs.nytimes.com/2013/1...od/?ref=health

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                    #24
                    Of course nothing applies to all people with MS and I totally agree that it hurts especially if someone hasn't been physically fit before MS started its destruction.

                    I think starting an exercise regimen, MS or not, for someone who has never worked out is similar to someone who is overweight and attempting diet portion control. Wen they start striving for normal size portions of food it can be very shocking and not a welcome change for sure.

                    When I started spinning classes despite being in decent shape my leg muscles ached for 2 entire months. I resigned myself to that being the price I was willing to pay but thankfully it did subside. FWIW those horrid little seats actually don't hurt forever either, probably something having to do with killing off nerve endings in your bum, lol.

                    Exercise also makes me tired and fatigued later. In many ways, especially immediately after, I do feel energized and it totally helps my mood and self esteem but I almost always have to take a nap on the days I work out heavily. Its the price I'm willing to pay for as long as I am physically able to do it.
                    He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                    Anonymous

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                      #25
                      Originally posted by SNOOPY View Post
                      Quite simply I want to maintain muscle for as long as I can. If I need to transfer I want to try and do so on my own for as long as possible.
                      I am primary progressive so I am not really going to "get better" like those who relapse/remit, I totally agree with your statement.

                      Proper exercising and technique (it is NOT supposed to wipe you out if you suffer from MS fatigue) has helped my activities of daily living and safety -- getting up from a chair, increased standing time, going up or down stairs, safely showering, floor transfers (getting up off the floor), getting out of bed, getting in/out of a car, etc.

                      I still cannot walk without an AFO plus cane or rollator and not for more than 10 minutes and I certainly will never get back my mobility (and who knows if this is slowing my progression) but doing just a little bit every day has definitely helped my quality of life and made things a little easier and safer.

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                        #26
                        Originally posted by SNOOPY View Post

                        Choices others make about their health and exercising is their own business and in the end, I personally do not care what choices someone else may make.
                        Then you should say so w/o belittling someone's else's choices. Your use of bold does the same. Snoopy is ashamed of you. You are Lucy to me. "The Doctor is in"

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                          #27
                          Originally posted by misslux View Post
                          I am primary progressive so I am not really going to "get better" like those who relapse/remit.
                          Those who relapse/remit are not really going to "get better" either...just sayin'.
                          Tawanda
                          ___________________________________________
                          Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

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                            #28
                            I think you know what I meant. People that are RRMS generally get better from their relapses/flares. Maybe not 100% but better than their flare state.

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                              #29
                              To JulesA's point, people should be aware that once you begin exercising (or change or increase) it takes a while to establish yourself -- about 6-8 weeks.

                              Your body and your mind will fight you all that time. This is also true of other lifestyle changes, like dietary changes, etc.

                              For me, exercising and also just living with MS, it has been very useful for me to focus on the difference between having symptoms and being sick. When I have symptoms, I just carry on, maybe slower, maybe more clumsily, maybe I have to go to bed earlier, but I know I'm not harming myself so why not keep going? If I'm actually 'sick' -- on the verge of relapse, or being active might make my MS active -- then I do stop. This is exactly the same kind of assessment I used to do as an endurance runner: Am I just tired/extending my fitness or am I actually at risk of injury/heat stroke?

                              Scientists are realizing more and more that aerobic exercise is protective of our brains, forestalls atrophy, improves cognition and memory, and promotes neuroplasticity. It's worth doing what you can. It is a training reality of exercise that you have to make yourself weak in order to get stronger.

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                                #30
                                I just realized so something about the title of your post. Nobody tells me to exercise. The hardest part of exercising is getting myself motivated. I think about that commercial about a body at rest tends to stay at rest while a body in motion tends to stay in motion.

                                I used to exercise to look good in a bathing suit (or at least to not to look extremely bad in a bathing suit), and now I try to exercise to try to maintain my independence! If exercise is just another MS placebo, I don't want to know because for about 30 seconds during my workout, I almost feel good!
                                Tawanda
                                ___________________________________________
                                Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

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