The Shape I’m In

by Dean Kramer 
September, 2002


There is something I've been puzzled by for a long time. When I say "a long time" I mean a time long enough for me to have gone, slowly, from weighing 129 pounds to weighing 157 pounds and then back to 134 pounds. I often hear that people with MS are supposed to exercise. Exercise is said to be absolutely necessary for keeping our muscle tone, aerobic fitness, and (sadly) to keep off excess weight. Speaking for myself, though, I find that I can exercise vigorously for about 2 minutes or, moderately, for about 10 minutes before I lose control of my limbs and my symptoms start acting up. Consequently I can never exercise enough to make the kind of difference I exercise for.

I was a sturdy athlete both before and during my first 10 years with MS— not spectacular, but I enjoyed many sports and participated regularly. I had no trouble keeping weight off. But as I began to stumble and fall more often, and as my balance became atrocious, many sports were no longer fun and some were downright dangerous. My appetite for food, never a cause for concern when I was active, also became downright dangerous and weight began to creep up on me. These days, I do a little (a very little) workout each day using latex stretching bands for arm and leg strength, an exercise ball for the aerobic portion, and stretches for flexibility. I do a few (a very few) Tai Chi moves for balance. None of this feels adequate but on those days when I push myself a little harder I fall apart a little more quickly. If I were to do a really useful workout I'd have to spend the rest of the day in bed recovering.

Early on, I believed swimming was the answer to my problems. I joined a local YMCA and plopped into the pool. The pool was heated. In addition, there was a ladder but no staircase into the pool (which I had not noticed in my eagerness to swim). I happily did 10 laps and then, overtired, overheated, and spazzy as can be I clung to the ladder unable to lift my legs and climb out. As I hung there recovering I recalled a movie, something about a ship with a horse that, having fallen overboard, is winched to safety from the turbulent seas. I wished for a winch. Someone asked if I wanted help, but I remembered once seeing group of worker ants trying to lift a huge and flaccid caterpillar, and I said "I'm okay, thanks. Just resting." It's all well and good to advise people with MS to accept help, but if your sense of bodily well-being has just received some bad news, as mine had, well· maybe you just want a little time alone.

I'm in okay shape for having lived with R/R MS for 18 years. I am able to walk unassisted— not far, mind you, and it doesn't always resemble what people without MS would call "walking," but I can do it. Relative to so many MSers I know, my life has been compromised very little by this disease. And I've been aided in the few necessary compromises by a variety of assistive appliances. I have a cane, and I often walk better carrying it over my shoulder than I do using it to lean on. I'm not sure why that should be so, but it seems that when I lean on the cane it throws my balance off just enough that I begin listing to one side. There have also been occasions when I've tripped over my own cane and fallen quite hard. I have a scooter. My neurologist tells me not to use my scooter if I can walk. He's concerned that I'll quickly lose my ability to walk if I don't keep it "tuned up." My dentist, on the other hand, would prefer I use the scooter because she'd prefer not to have to patch any more chipped teeth.

And the bottom line for me is that I'd LOVE to exercise. I want to feel fit and vital. Not only is it cosmetically meaningful to me, it's important for maximizing health with MS— less weight to haul around, less pressure on organs including the ever "iffy" bladder, improved circulation and less discomfort from fluid retention in the hot, humid summer months. I search Web sites, even those for people with MS, for "how to" information about weight loss and exercise. And the answer is always the same: You need to do 30 minutes of vigorous exercise each day in order to lose weight and keep it off. And I can't do 30 minutes of vigorous anything (except, possibly, whining).

Well, I have taken 18 pounds off over the past several months using my very little workout and a sensible diet. And I plod along with this program only occasionally veering off on a Ben and Jerry's binge. I also try to make exercise and sport out of many of my daily activities at Cripple Creek. For instance, I rise from my chair to cross the room and, due to MS balance problems, find myself dizzily turning to the right or left. I used to immediately correct this tendency to yaw. However, now I kind of go with the spin. As a result, it can take me quite an entertaining while to cross a room and I get more exercise doing it. MS memory difficulties have also added a venue for exercise. I get to walk from the house to the car and back many times as I remember each thing I forgot to take with me in the first place. Or, as a final example, after seeing a particularly beautiful and balletic martial arts movie recently, I rethought my dog-yard cleaning chores. Now, a master of the art of scoop-wielding, I star daily in "Crouching Cripple, Hidden Poop."