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    #31
    Find What Works For You

    What's hard about most general MS questions is that each of us don't necessarily have the same MS 'experience'. Depending on how the disease impacts us, the rate of our progression, the types of symptoms, etc. - what one person can do, the next can't, what works for one, doesn't work for another and so on.

    The best answer is to do what you can and listen to your body. And as a couple others mentioned - it doesn't have to look like 'traditional' excercise.

    In my current situation, I count vacuuming the floor and folding laundry while standing up as 'excercise'.

    Starting a new excercise routine is actually what led me to my MS dx back in 2003. It was a very mild routine because I hadn't done regular excercise since having my daughter in 1998. I knew I had to start slow and build up. But instead of having the normal experience - as I continued to follow my excercise routine I started to steadily feel worse overall and have 'weird' and 'painful' sensations.

    In the years since my dx, I've tried many times to start and maintain any kind of excercise regime. But every time, no matter how mild or low impact, etc - I have the same problem. I begin to feel worse and worse as the days/weeks pass. When I stop - I start to feel better again.

    This bothers me quite a bit because I have gained some weight - luckily I've been able to manage it by what I eat so it's not gotten out of hand. But still - I would rather be able to excercise and tone things up, etc.

    However, any kind of traditional, routine or regular exercise just wreaks havoc on my health. But what my Neuro just recently suggested is to do very short bits of excercise 'whenver' I can. Even if it's just a couple minutes at a time throughout my 'better' days.

    When he pointed out that excercise doesn't have to 'look' like what most people consider it to be it helped me to realize I just have to do my own thing. Even if that means random and irregular short bursts of movement when I'm able.

    I will go weeks in a row where just getting out of bed and getting up/down the stairs is my 'excercise'. Then I'll have a other times where I can do more. Housework is excercise for me. A short walk at whatever pace I can handle here and there is excercise for me.

    But as RDMC mentioned, I'm in a situation where I have extremely limited energy/strength. So I am in a constant battle of having to choose where and on what I'm going to use that energy. I'm always behind...meaning, there's always way more that needs to be done and that I want to do than I can keep up with.

    So for me, excercise is always incorporated into something else I'm doing - housework, a trip to the store (walking counts!), even taking a shower and doing my hair - believe me, it's like climbing a mountain to me! My arms are shaking before my hair is even dried all the way!

    Anyway - I guess the point is - YOUR excercise doesn't have to look like anyone elses excercise. Try different things and find out what you can do and what works for you overall. Be creative - any movement is a good thing! =)

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      #32
      I have been doing water aerobics at the 'Y' beginning a year after I was dx'd. You have to realize that your body with MS is different than it was before MS. You can't be as mobile as you were, so you need to make changes in your diet and exercise. Do not think that your regular pcp will have any idea as to what you can do. They can advise based on knowing your current physical condition, though.

      Also, realize that there is a link between physical activity and endorphin release / production. The MS disease effects so many systems in the body that you need to monitor your health differently than you did before MS.

      I am not on any MS drugs. I use LDN and take many supplements. Vitamin D levels are crucial and B vitamins are, as well. So for me to find some sanity with this MonSter, DIET AND EXERCISE. Even if the exercise is simple.

      Comment


        #33
        Stretching every morning, walk with dog 1 mile.
        "So, perhaps our task in this shaky, fast-changing, bewildering world in which we live is to make music, at first with all that we have, and then, when that is no longer possible, to make music with all that we have left." UNKN

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          #34
          To Dave


          Yes, Thank you Dave for creating the active MSer webb site!!

          You inspired me to start ridding my bike a year ago and it was a revelation, I don't feel handicapped at all on my bike!!!


          I struggle to walk a mile but I can now ride 70 miles and not be more tied then the other guy.

          I now ride 80 miles a week and have done one MS 150

          Of Course I am lucky to be retired and have the time to do the training and not so lucky to be 65 old!

          I also have done yoga and meditation for 30 years.
          I have been DX 3 years ago with a flair who lasted for ever ( about 9 month) and I am on Copaxone with no relapse.

          I do really believe that exercise help and in my case maybe not so much the walking but definitely the fatigue and the cog fog .ily
          I know it is very hard at the beginning but if you find a exercise you enjoy then it is easier to keep at it.

          Alain

          .

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            #35
            Exercise not helpful

            Dear rdmc,
            Thank you so much for your post on 3-19. This is me exactly! When I tell my family and friends that I gain no benefit from exercise, they don't believe me. Afterall, studies have shown that exercise benefits everyone including MS patients. My exercise is also my housework and at least I am accomplishing something measurable. I am printing your post to show to my husband. It is so nice not to be alone. Thanks again. You made my day!

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              #36
              Sequoia's had a stroke? That's just awful news. Just saying her user name always makes me feel calmer.

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                #37
                I know how you feel..I try and walk when I can. It is very hard with the fatigue and depression to get Moving... I have also gained weight which is depressing in and of itself.

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                  #38
                  Just the opposite.

                  18 years ago, I was diagnosed. Felt pretty good, in my arrogance, I was determined that this malady wouldn't interfere with my life, I had kids to raise, I didn't have time for MS. I started lifting weights, I managed symptoms, I beat cervical cancer, I was invincible.

                  Until seven years ago. The weight machine collects dust, the treadmill collects dust. I walk when I can. In the past year I've lost eighty pounds. We don't know why, but I'm still losing and it's starting to scare me.

                  Do what you can, as long as you can. Adapt and deal, compromise and concede. The only other option is to lay down and die.

                  XXXOOO
                  Anna

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                    #39
                    Oh, Anna, my thoughts and prayers are with you.

                    I was doing toning and stretching exercises 5 times a week in the morning. Core, Upper Body and Lower Body and I even went running. I was enjoying my workouts and felt like I was taking control after my Dx. I felt so good!

                    TO THE DAY I began my Copaxone shots, that went right out the window due to extreme fatigue, dizziness and weakness. My Neuro says this is the weirdest reaction he ever heard of, and does not believe it's connected to my Copaxone. I am unsure if this is my first flare still (that never really went away ), a symptom of my Gabapentin, my Solu-Medrol wearing off, or a result of beginning my shots.

                    I have been depressed, sleepy and generally fatigued and I feel sort of stoned, out-of-it since. I reduced my Gabapentin PM dose from 600 mg to 300 mg and did recently experience some alertness, but the trigeminal neuralgia is throbbing.

                    Well, I am furious. I could cry. I am on my second month of Copaxone and have basically slept or rested my life away since beginning the shots. My Neuro AND Allergy/Immunology/Rheumatolgy Dr. are avid runners and are excited to see me hit the road again. Me, too!!!! WHEN? When will I feel good enough to resume my workouts?

                    I am taking stock and taking control these past two weeks with ordering vitamin therapy supplements specific to MS, making an acupuncture appt for 4/21 and continuing to tweak my eating plan. I may even learn meditation. Deep tissue massage is in my future, too.

                    I am determined to take control wherever possible and incorporate holistic approaches with my Rx and lifestyle changes. I WILL RESUME MY WORKOUTS.
                    Dx: 2/3/12. 6-8 lesions right medulla/cervical spine. GLATIRAMER ACETATE 40 mg 1/19, medical marijuana 1/18. Modafinil 7/18, Women's multivitamin, Caltrate + D3, Iron, Vitamin C, Super B Complex, Probiotics, Magnesium, Biotin.

                    Comment


                      #40
                      Originally posted by hobbit View Post
                      18 years ago, I was diagnosed. Felt pretty good, in my arrogance, I was determined that this malady wouldn't interfere with my life, I had kids to raise, I didn't have time for MS. I started lifting weights, I managed symptoms, I beat cervical cancer, I was invincible.

                      Until seven years ago. The weight machine collects dust, the treadmill collects dust. I walk when I can. In the past year I've lost eighty pounds. We don't know why, but I'm still losing and it's starting to scare me.

                      Do what you can, as long as you can. Adapt and deal, compromise and concede. The only other option is to lay down and die.

                      XXXOOO
                      Anna
                      Thanks Anna for that honest post and I think it illustrates what some of us have found when dealing with our MS. You can until you can't, and then you redefine what you can do and continue on, and this process is repeated over and over again. And it applies to so many areas, not only exercise, but household chores/responsibilities, social interactions, cognitive and/or work related abilities, etc.

                      I love your last paragraph, it's eloquent...I'll think I'll print it out and put it on my frig as a reminder of how to deal with this disease.

                      Hope you discover the cause of your weight loss.

                      Comment


                        #41
                        Anna,
                        Drinking Ensure helped me gain back weight over the past year. I had lost too much weight and was at too low a level - incorporating Ensure with meals helped me to gain and increase my appetite. Hope this helps.

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                          #42
                          I'm glad to have helped, Alain. And for those who feel exercise has limited benefit in MS, maybe reconsider. I get that there are a finite number of "spoons" in a day, that every task is a challenge and requires energy, both physical and mental. But what if exercise, even though it may cost a spoon or two at the start, eventually gives you an extra few spoons to play with every day? Or equally important with this progressive disease, delays you from losing the precious spoons you have? Just a thought.

                          -Dave

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                            #43
                            I don't want to let this thread vanish. Exercise may be more important than any of us realize, and may even be disease modifying. This analysis was published earlier this month (reposting has been approved); this is just the intro.

                            Exercise and Disease Progression in Multiple Sclerosis
                            Ulrik Dalgas PhD; Egon Stenager MDMS
                            Posted: 04/06/2012; Ther Adv Neurol Disorders. 2012;5(2):81-95. © 2012 Sage Publications, Inc.

                            Despite the fact that MS patients for many years were advised not to participate in physical exercise because it was reported to lead to worsening of symptoms or fatigue, it has become generally accepted to recommend physical exercise for MS patients during the last two decades [Sutherland and Andersen, 2001]. Exercise is well tolerated and induces relevant improvements in both physical and mental functioning of persons with MS [Dalgas et al. 2008]. It is an open question whether exercise can reverse impairments caused by the disease per se, or whether exercise simply reverses the effects caused by inactivity secondary to the disease. However, most likely exercise may reverse the effects of an inactive lifestyle adopted by many patients [Garner and Widrick, 2003; Kent-Braun et al. 1997; Ng and Kent-Braun, 1997; Stuifbergen, 1997]. Nonetheless, it has been suggested that exercise might have the potential to have an impact on MS disease progression by slowing down the disease process itself [Heesen et al. 2006; Le-Page et al. 1994; White and Castellano, 2008b].
                            The study's finding: It was concluded that some evidence supports the possibility of a disease-modifying potential of exercise (or physical activity) in MS patients.

                            More food for thought.

                            -Dave, ActiveMSers.org

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                              #44
                              Daniel Pink, the author of Brain Rules, points out that studies done during the 90s have concluded that brief bursts of high intensity exercise stimulate the body's production of human growth hormone. This in turn helps generate new brain cells as well as repair damage in the body.

                              If I'm remembering correctly, these high intensity bursts require an all out effort for a sustained 30 seconds. Human growth hormone is increased for four hours after the exercise, and lengthening the time of that burst didn't lead to any further increases in the HGH.
                              It's not fatigue. It's a Superwoman hangover.

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                                #45
                                Oops. Sorry. Got my authors mixed up. Brain Rules was written by John Medina.
                                It's not fatigue. It's a Superwoman hangover.

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