In a fair world, reading books would burn the most calories, eating ice cream would be chock-full of antioxidants and vitamins, and no one would have multiple sclerosis. But, like many other people, I have MS and have to live with fatigue, cognitive issues, trouble walking, and so much more — often at the same time.
As in so many cases, “everyone” recommends EXERCISE. This is especially hard for those of us who have never exercised and never cared to do so. I managed to stay minimally functional for a long time (blind with optic neuritis in my left eye since 1987, diagnosed with MS in 1994, and unable to walk or use my right arm in 2000, subsequently mostly recovered), but I was by no means fit.
One thing I do enjoy is riding a bike, and I have a nice multi-speed bicycle. But I am afraid to ride outside lest I get a flat (I am not strong enough to fix a flat) or venture too far and am unable to get back again. So I got a new wind trainer, and then a new bike seat (fitted properly, too — huge difference!).
But even 10 minutes was too much between shortness of breath, fatigue, and (oh, joy) I now have arthritis, too. I had previously done yoga, dropping down to “gentle yoga,” and really like “yin yoga,” and did feel better doing that. Especially important was my improved balance; it’s still not “normal” or even “below average,” but I didn’t always have to hold a chair.
After two surgeries for two torn ligaments — and six months in hand-to-shoulder cast — from a fall, followed by knee surgery, and topped off by excruciating pinched nerves in my back and the arthritis in my left hip, I was getting very worried because I was gaining too much weight. Though I was not eating excessively (except maybe too frequent ice cream), my metabolism had changed subsequent to a year or two with a paralyzed stomach (gastroparesis), which caused my weight to dropped to 118 pounds (I am 5’8”). I was so gaunt I did not recognize myself in the mirror one day.
When the gastroparesis eased, I was able to put weight back on, but it did not stop at any point that I would have preferred. However, between the surgeries and such I couldn’t exercise (at least, that is what I told myself). I was doing physical therapy and taking shots for the arthritis, and returned to yoga class, and did a little swimming (aqua Zumba, too). But I still struggled to walk to and from the parking garage at the public library, which has an inclined plane for part of the way, especially when carrying books. I tried to get the two miserable handicapped spots out front, but managed only about 25 percent of the time.
Frustrated with myself, my lack of will power, my body, and my situation, I decided I had to change what I was doing, and how I was approaching the whole process of “moving.” My big fear was that I would end up in a wheelchair and be too heavy to be able to lift myself out to use the bathroom. I had heard that the rule of thumb was one care attendant per 50 pounds. I am definitely past three. Since they cost per person, I cannot afford to be overweight. But what to do when I “can’t walk” and “can’t stand,” and am so freaking tired I can barely pop something in the microwave for dinner.
I needed to make a dramatic change in the way I moved so that I could continue to move. Yoga is good for balance and flexibility, but not for moving.
Feldenkrais and Thinking About Movement
Then I remembered the when I lived in New York, some musicians and all the Juilliard dancers, especially, were really into a practice called Feldenkrais, named for the man who invented it: Moishé Feldenkrais (Google him, fascinating life story). And darn it, when I was living in New York and he was there (he died in 1984), I never got around to studying with him. But I had identified my problem: my brain was not able to tell my body how to move well anymore. I had to concentrate, and sometimes my body just would not respond to my brain.
So I decided to see if a Feldenkrais practitioner was local, or even not so local. I would consider driving to a bigger metropolis if necessary, because I somehow knew this was what I needed.
Thankfully, there is a fantastic woman who comes to town once a week. She teaches two classes a day, one morning and one evening, and does “bodywork” in private sessions in between. The bodywork resembles massage a tiny bit, and physical therapy a tiny bit, moving various body parts while you remain relaxed (which is really hard to do). But this combination of being relaxed and being moved seemed to help my brain recognize, “oh, my foot can move that far” or “I can get up from the floor without a chair or nearby prop.” Eventually, I was able to make the movement by myself; my brain pathway has “learned” how to move an arm, a foot, or whatever.
One of the most peculiar aspects of a Feldenkrais class is that you actually spend a lot of time laying on a foam mat. Believe me, it is work. The goal is to pay attention to your body. When you first start to try to move your arm, what actually happens? Do you stiffen your stomach and back? Do you move your shoulder blade, or just your shoulder joint? Make your brain THINK about movement, and how to make movement as efficient, smooth, and easy as possible. One of the key concepts is that movement is work. Think of it reaching for milk, for example. If you plant your feet and simply stretch your arm into the refrigerator and pick up a full half-gallon, your arm will be taking a lot of weight and you may be pulled off-balance.
How Feldenkrais Works: Reaching for Milk
A better way to move, and to keep your balance without overworking your arm, is to use the big muscles of the legs and torso for a lot of the effort. Instead of standing with your feet close together, side by side, and your hips facing the refrigerator, try putting one foot forward some and rotating your pelvis so you are at a diagonal to the open refrigerator door. Then bend your forward knee a bit to take more weight and support your torso as you reach, stretching your whole side body plus the arm to grab the milk, and then pull back by shifting your weight to your back leg. The front leg helps bear the weight of the milk, and your other hand is free to come forward and help transfer the milk to a counter.
A milk reach might be hard to start out with, but the point is that there are other ways to move, especially relaxed and supple ways, that you can start thinking about, gaining “awareness through movement” with Feldenkrais lessons. You will barely break a sweat, but you will gain strength (not because you are pumping iron, but because you are using big muscles) and balance!
At my first private session, I said my goal was to be able to walk. I could, technically, walk short distances (no wheelchair yet, just a walker and canes, and Canadian crutches). But when I walked, each leg was so heavy, dense really, it was like I was moving 50 pounds per leg. My practitioner immediately saw what was wrong. I was not moving my hips AT ALL. None of the big muscles were doing much work to propel me forward. I was simply trying to lift my leg straight up, with a frozen “cereal box” torso.
She explained the problem, and offered me options to use the bigger muscles in ways different than ever before: instead of tensing my body to prepare to lift a leg, I kept it relaxed and rotated my pelvis diagonally. Basically, I was pushing my leg forward using only slight muscle effort to lift the leg. IT WAS EASY! Further work brought the torso into play to soften the cereal box formation, and to rotate the opposite shoulder forward to balance the forward-moving leg.
By the end of the first session, I understood my body so much better, knew I could not only walk better but so much more — I would not exhaust myself by strenuous exertions beyond my capacity. I was thrilled! I was hooked. I signed up for group lessons with bodywork after the morning class. So I now have a day dedicated to my physical self. And of course, I practice at home for short periods several times a day. Not necessarily walking but laying on the floor, because gaining a sense of your body and how it moves lying on the floor is just about as good as being upright. It all works to strengthen the brain-body connections! Since my connections are somewhat shorted out by MS, this is helping with the neuroplasticity of the brain to create new and more connections that can ignore the broken ones.
How Feldenkrais Helped Me
Now, with consistent practice of just a few exercises that look like I am hardly moving, or simply rolling around on the floor, my back and hip are so much improved I have not had to get any more nasty steroid shots for months.
I would never ever have thought I would become one of those “exercise is good for you” people, but here I am telling you to try this form of exercise. With Feldenkrais, I found the right exercise for the capabilities I have, despite MS. It has also shown me, to my continual surprise, that I CAN do things I thought I could not and to think of alternatives when I find myself stuck. I now believe that I will not become wheelchair-bound (I hope) because I have changed and learned to move.
Look for a certified Feldenkrais practitioner, a a chair or gentle yoga or yin yoga class, Or, if you are a little more fit and can stand without too much trouble, find a really good teacher and Tai Chi class. It looks like it shouldn’t be hard, but it is and in a way that is really good for your brain. You move the left and right hands and both feet in different ways at the same time, improving brain connections to your body. I highly recommend attending a number of Feldenkrais lessons first, because you will benefit more and be able to do Tai Chi better if you know how to listen to your body and understand how to move.
Feldenkrais changed my life, and I am grateful to the loving woman who is my teacher. She helped me change my life for the better. I hope that you, too, can find the right program to keep you moving.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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