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    #16
    I am passionate about exercise, specifically endurance exercise. Ten years ago I was using a cane, headed for a walker and possibly a wheel chair. The MS gait had already trashed out one knee and was working on an ankle and my back. But, a good PT, an orthotic or two, a number of false starts and in just 3 or 4 years, presto, I was on a path to recovery and I haven’t looked back since.

    I have a number of good friends in various stages of disability from MS. We all only met because we were trying to stay active and although I may be luckier than some, what we occasionally talk about is how much more time each of us has bought ourselves just by trying. And we still are buying ourselves time.

    A sports physiologist and professional football trainer once pointed out to me, “The human body is the only machine capable of improving with use. Do what you can with it, it’s what it was made for.”

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      #17
      Originally posted by rdmc View Post
      Okay, I just have to say there are many folks on this board who know very well that they can't exercise in the traditional sense...no matter what they think. It's not mind over matter for them, it's a reality...they cannot exercise in a manner most folks would consider exercise.

      As far as building endurance, that's not been my experience either, from the very beginning of my MS symptoms, I could do so much and no more before my muscles would fatigue. No matter the amount of PT or sticktoitness...the muscles would work for a certain amount of time, then quit. My husband's a gym addict and even early on, if I'd go to the gym with him, it was the same. No matter how many times I'd do an exercise or machine, so many reps, and my muscles would rebel and start to wildly tremor...quite the entertainment for anyone watching, LOL. Never was able to build stamina.

      I thought getting a baclofen pump would increase my walking distance. Nope, it helped me to still stay mobile, it helped me walk with less pain and made my gait look more normal...but still couldn't walk any farther than I could before.

      I was able to exercise in the past in short spurts, never walk very far, but had some great exercise equipment in my home that I could use. But now I can't seem to use it anymore...so my form of exercise has become doing what I can do to keep active.

      Loading or unloading a dishwasher, sitting on the bed and folding laundry, cooking a meal, has become a form of exercise. Not exercise in the traditional sense, certainly not aerobic, but movement. And I'm blessed to be able to do that. There are others on this board who even activities like those are beyond them.

      So exercise is what you make of it, main thing is to do what you can, when you can, and don't think because it's not "exercise" in the traditional sense, it's not helping you.

      What's the saying "Motion is lotion" and any amount of motion we can coax out of these MS bodies is good.
      I honestly can't speak to whether or not someone truly can or can't. Only the person knows that. What I meant - and maybe you would agree with, is that in most aspects of life, most people do less than they are able. One look at people going in and out of a store tells you that even those who can, don't exercise.

      I mean no offense to anyone who screams at their muscles and they don't move. But if you could do more (and each person knows for themself), then you would likely get some benefit.

      Plus, our dear Sequoia just had a stroke and we wish her a speedy recovery. Her stroke reminds us that we're still not spared all the other diseases that affect us as we get older. Anything we can do to help is a good thing.

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        #18
        Originally posted by BigA View Post

        I mean no offense to anyone who screams at their muscles and they don't move. But if you could do more (and each person knows for themself), then you would likely get some benefit.

        Plus, our dear Sequoia just had a stroke and we wish her a speedy recovery. Her stroke reminds us that we're still not spared all the other diseases that affect us as we get older. Anything we can do to help is a good thing.
        I totally agree that anything we can do to help is a good thing. But there's the trade off for a lot of us. the hard choices...do I expend my energy at this activity or that...if I can "exercise" will I still have the energy to do this or that other thing later in the day...the old Spoon Theory in action.

        that will be different for each person and will take experience and experimentation ton find the balance. However, know this..just because it works today, doesn't mean it will work tomorrow. Of course each person's course of the disease is different, but the disease is in control...and it allows you to do until it doesn't.

        I'm dealing with a flared up lesion right now in my medulla and no matter how we try to control the symptoms, they seem to be beyond controlling. Maybe tomorrow that lesion will calm down, maybe it won't, but I have no illusion that I am in control. I like the feeling of control as much as the next person, and being robbed of it by this disease is probably my hardest struggle...harder than dealing with the symptoms. Being able to exercise does help us have a sense
        of control, and there's nothing wrong with that. Nothing wrong with holding on to that control for as long as we can.

        Thanks for mentioning Sequoia...I didn't know...my prayers are with her for a speedy recovery.

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          #19
          the gym

          I joined a gym and although I can't do the treadmill or stair climbing, I do the recumbent bike and other 'sitting' exercises. This gym is a month to month without any contract.

          I do find this time uses up some of my daily amount of energy, but I do burn more calories than before, so I'll continue as long as I'm able
          Susan......... Beta Babe since 1994....I did improve "What you see depends on where you're standing" from American Prayer by Dave Stewart

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            #20
            Just move

            I do consciously make myself move everyday. I have lost a lot of muscle due to lack of appetite and lack of the level of activity I once had. The buzzing and aching I get in my behind from sitting too much makes me worry about circulation.

            So I do hand weights in front of the tv. I do about 200 rotations a day on the elliptical (the treadmill wants to kill me so that's out). I try to walk my dogs 4-5 times a week now that it's nice out but frankly didn't leave the house much this winter since I can't get warm enough as it is when it's cold out. I was actually starting to worry about pressure sores so this freakish warm March has made me happy that I can do more.

            I don't worry about weight because I am pretty much a vegetarian except the occasional seafood. I am more worried about keeping my ability to move. And the excercise that I get definitely helps improve mood, especially if it's in the sun.
            I don't fall, the floor attacks me. The corner of the bed is in on it too.

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              #21
              its2much, I've posted dozens of exercise-specific MS study abstracts at ActiveMSers.org's forum (Fitness area) over the years. In general, researchers have found that strength and aerobic exercise for people with our disease is universally positive, in some cases dramatically so. It's one of the reasons I started ActiveMSers, to help motivate those with MS to stay active.

              I also publish an e-newsletter that, in addition to lots of tips and tricks (and humor), highlights recent studies. This is a short blurb on exercise research I published last week (links disabled).

              Aerobic exercise decreases fatigue in all types of MS
              Researchers confirmed in a recent study that MS relapses not only are not associated with exercise but also (anecdotally) were less frequent in those participants who exercised the most. Does exercise improve quality of life in MSers? Yes, says this study, working out improves patients both physically and psychologically. And just recently, researchers from Denmark found that "specific exercise training once a week is an important and easily performed tool to improve focal neurological deficits, especially motor weakness, spasticity and gait impairment in patients with MS. Additionally the quality of life is increased and fatigue ameliorated." But the big eye-opener (and motivator): Italian researchers discovered that aerobic exercise decreased fatigue and improved endurance in all types of MS (RRMS, SPMS, and PPMS). Any questions?

              I hope you get a chance to look around and get motivated. You can definitely do this if you start slow and stay determined. Baby steps.

              activemsers.org

              -Dave Bexfield, founder

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                #22
                Originally posted by rdmc View Post
                I totally agree that anything we can do to help is a good thing. But there's the trade off for a lot of us. the hard choices...do I expend my energy at this activity or that...if I can "exercise" will I still have the energy to do this or that other thing later in the day...the old Spoon Theory in action.

                that will be different for each person and will take experience and experimentation ton find the balance. However, know this..just because it works today, doesn't mean it will work tomorrow. Of course each person's course of the disease is different, but the disease is in control...and it allows you to do until it doesn't.

                I'm dealing with a flared up lesion right now in my medulla and no matter how we try to control the symptoms, they seem to be beyond controlling. Maybe tomorrow that lesion will calm down, maybe it won't, but I have no illusion that I am in control. I like the feeling of control as much as the next person, and being robbed of it by this disease is probably my hardest struggle...harder than dealing with the symptoms. Being able to exercise does help us have a sense
                of control, and there's nothing wrong with that. Nothing wrong with holding on to that control for as long as we can.

                Thanks for mentioning Sequoia...I didn't know...my prayers are with her for a speedy recovery.

                Yes they are.

                Thank you for explaining that. I understand better now. I suppose then I'm talking to those people who could exercise but don't - or could start small and build and build.

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                  #23
                  I made a decision to lose weight and get in better shape when my MS started to get worse at around age 33.
                  I have found that aerobic exercise is the single best thing for my mood and sense of well being.
                  It wasn't easy to motivate myself because of fatigue, but at a certain point it turned around and I started to gain energy.
                  My problem with heat intolorance decreased too and is almost never a problem anymore.

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                    #24
                    I don't, but I know I need to get back to it. I did the Wii Sports aerobics and balance exercises for awhile, then did some regular walking a few times a week, and then did some Poolates (Pilates in the Pool).

                    I loved the Poolates best but my body couldn't take the bromine (sp?) water.

                    I do better when I have an actual class to go to - because otherwise I have a hard time getting motivated.

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                      #25
                      Yes! I was doing 3 days of high-impact aerobics/week prior to the Big Flare this past December...after that I could barely walk a block. I'm up to 3 days/week of 1-3 mile walks and I do stretches 2'ce a day.

                      I'll be adding some arm and shoulder weights soon - but I had to take time off as I sprained the hell out of my arms and wrists hauling and throwing myself about in a semi-apelike manner when my legs weren't working as well (and I'd get irritated/impatient and muscle through things.)

                      I feel 10 times better on exercise days - both mentally and physically. I ordered some cooling gizmos for when the weather heats up so I can continue my routine.
                      RRMS 2011, Copaxone 2011-2013, Tecfidera 2013-current

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                        #26
                        If you can, you should exercise.

                        Does Exercise slow progression?

                        Danish researchers have attempted to examine this question through a systematic review of all the studies on exercise that have addressed this. Naturally there is less evidence here than about drug therapies in MS due to a lack of funding for suitable studies. Nevertheless, the authors found considerable evidence in the animal model of MS, EAE (experimental autoimmune encephalomyelitis), and in clinical studies of people with MS to suggest that exercise may well have a disease-modifying effect

                        http://www.overcomingmultiplescleros...rogression%3F/

                        Click the little icon at the upper right to read the paper.

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                          #27
                          Yes, I do exercise. I walk between 1.5 and 2 miles after lunch almost every workday. I ride a stationary bicycle for 5 miles every evening after dinner and do 25-30 push-ups and 30-50 sit-ups before bed each night.

                          That having been said it is important to add that after the lunchtime walk I am usually suffering from very cloudy vision in my left eye, a wobbly gait, an inability to effectively use my right hand, and so on. A pseudoexacerbation extraoirdinaire. An hour or so later, though, and everything levels out again - mostly/usually.

                          Similar experience after the exercise bike and the push-ups and sit-ups other than I generally need help dismounting the exercise bike as my feet and legs aren't working so well at that point.

                          Still I feel incredibly fortunate to be able to do all of these things and deep down believe that a day will come when I am no longer able to do so.

                          Because of this I feel that if I don't exercise when able I am squandering both time and opportunity. That and I feel great both emotionally and physically after a rewarding workout (usually)

                          -Jon
                          2011 - DX RRMS
                          Taking Betaseron since June 2011

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                            #28
                            A friend i went to school with told me once, when it comes to muscles, use them or they will atrophy. Ever since, i've religiously exercised, even if i don't want to.
                            hunterd/HuntOP/Dave
                            volunteer
                            MS World
                            hunterd@msworld.org
                            PPMS DX 2001

                            "ADAPT AND OVERCOME" - MY COUSIN

                            Comment


                              #29
                              Originally posted by ActiveMSers View Post
                              its2much, I've posted dozens of exercise-specific MS study abstracts at ActiveMSers.org's forum (Fitness area) over the years. In general, researchers have found that strength and aerobic exercise for people with our disease is universally positive, in some cases dramatically so. It's one of the reasons I started ActiveMSers, to help motivate those with MS to stay active.
                              Dave, thank you for starting ActiveMSers! I registered a couple of months or so ago and ordered the exercise DVD in hopes to be able to enhance my activity level. I never received it! Actually, I went back to re-order it and still no DVD! Could you explain? Thanks for your reply.
                              1st sx '89 Dx '99 w/RRMS - SP since 2010
                              Administrator Message Boards/Moderator

                              Comment


                                #30
                                Seasha, glad you are enjoying the site. The free exercise DVD link is through Biogen (the makers of Tysabri and Avonex). If I were sending out the DVDs, I assure you that you'd have a stack by now! You can try calling their ActiveSource Coordinator at 1-800-456-2255 and explain your situation... and that, hmm, you might be thinking about switching meds. I bet you'll get your DVDs quickly. Order both the regular exercise DVD and their yoga one for good measure; both are free and well done.

                                Perhaps down the road I'll do a DVD for ActiveMSers, but for now written articles will have to suffice. In fact I've got a pro bodybuilder (with MS) just starting to work on a seated exercise program--strength and cardio. Cheers,

                                -Dave

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