BWAH-HA-HA-HA

By Dean Kramer
August, 2006

Some years back I tried physical therapy. Through it I expected to fully recover from all of my MS-related mobility difficulties. In addition to my unrealistic expectations, the people with whom I worked were primarily oriented toward sports and injury patients. They didn’t understand about MS fatigue and the neurologic difficulty that just lifting my leg entailed. After a brief initial evaluation I was given too many different exercises, too many sets and reps, and was left alone to do them while the PT attended to other patients. The therapist came by every-so-often to offer encouragement, but no one helped me in any significant physical way. Finding the whole situation frustrating, too tiring and, thus, pointless, I quit after three sessions.

Several years ago I went to see a massage therapist who was also a PT. She showed me a few yoga stretches that offered the further benefit of stimulating nerve pathways. But after a few sessions she moved away, too far away for me to continue with her.

Meanwhile, I’d bought a low-impact elliptical-type machine figuring to use it for aerobic workouts. I used it every once in awhile and enjoyed the sensation of walking and running that it provided but it was not as compelling an activity as just about anything else I could think of to do.

Because I fell and had a tendency to injure myself, I began using a manual wheelchair with increasing frequency. I felt safer, lighter in spirit and more graceful in the wheelchair. When I walked it was with slow, lurching, ponderous steps. In a wheelchair I flew.

In the two years during which I didn’t do much walking I lost a lot of strength in my hips, legs, and feet. I began losing core muscle strength in my trunk, butt and abdomen. I was less able to walk when I had to. Lifting my feet became more difficult. At first I decided this was simply evidence of my MS gradually worsening. But one day in dismay I realized that the more I used the wheelchair, the more I needed to use it. (Cue the Evil Laughter sound effect) The wheelchair had become—BWAH-HA-HA-HA—an addiction!

Good wheelchairs are custom-fitted to your size. Now, remember the little goldfish you bought at the pet shop or won at the State Fair? If you nurtured it carefully, feeding just the right amount of fish flakes, it grew to fill its little round bowl until it needed a bigger one, didn’t it? Well, I had been nurturing myself carefully, too. Even though I couldn’t exercise effectively enough to burn calories I still had to eat, right? And, though I tended to eat a low-fat diet, I hadn’t made the discipline of it I might have. I was becoming—BWAH-HA-HA-HA—a large fish in a small pond!

MS doesn’t kill people. But people with MS often develop secondary complications that lead to death. Among them, cardiac and circulatory difficulties, pneumonias and other pulmonary problems, and infections relative to the urinary tract or pressure sores. Some of those can come upon people without MS, too, of course, but it began to dawn on me that the way I was living was actually an invitation to any and all of those things. Every potato chip, each slice of pizza, the lack of aerobic exercise, the slacking off on stretching, and the loss of coordination my sedentary choice entailed were actually— BWA-HA-HA-HA—hastening my demise!

Thus terrified, I took a ride around Cripple Creek and thought long and hard about my complacency. I thought about my 79-year-old mother heading off on a 10-day cruise with an 85-year-old buddy. I asked myself if I was willing to do whatever it might take, no matter how boring or repetitive, in the interest of saving my own life. I decided I was, and I made a commitment to it.

As a resuIt, I put my manual wheelchair away, put a small travel scooter in the car for distances truly too long to walk, and got a 3-wheeled walker. I feel ungraceful and very slow using it. But I believe I am maximizing my potential health and I want that now more than I want to look good.

Currently, when offered a slice of pizza I actually think about what I’ve eaten or plan to eat that day before accepting. Sure, one can always eat more circumspectly tomorrow but I want to do whatever I can today to insure that there will be a tomorrow.

Now, each morning, before getting out of bed, I do the yoga stretches I’d been given all those years ago for flexibility and to stimulate sensation in my feet. Next, I put on my favorite music and put in 15 minutes of speedy aerobics on my elliptical machine (currently that is all I can handle before my core temperature gets too high to exercise safely). And, finally, I’ve had the good fortune to have a friend who is in physical therapy with an outfit that truly understands how to work with an MS patient. Since we are similarly disabled, she is kindly forwarding exercise suggestions—things she’s doing at home—things I can do as well. I’ve added them into my daily routine.

I’m not expecting a miracle this time. I’m not looking for six-pack abs or the ability to run a mile. I don’t care about recovering my girlish figure. But something miraculous (to me, anyway) is occurring. For example, in the two weeks during which I have done all three components of this home-made program I have gone from being able to do 4 leg-lifts on a good morning to being able to do 20. It has made walking a little less difficult and I can lift my feet into the car a little more easily.

That has been all the encouragement I’ve needed to continue even on the mornings that aren’t so good. On such days I allow myself to do fewer reps because I can now tell when the difficulty is MS rather than a failure of will. I try to do my entire program mindfully, concentrating on each piece and not thinking ahead to the next thing or (worse) to the meeting I have with a client in 2 hours. Two days each week I work 8 hours away from home and, on those days, I do slack off. The rest of the time I do the whole routine to the best of my ability. Sometimes I do it joyfully and sometimes I do it with gritted teeth, always aware that doing this is doing what I can to prolong my life. And after years of really disliking the slogan, I am finally saying, “I may have MS, but MS isn’t going to have me.”

In the past, when I took up an enthusiasm, I expected big results quickly. If such were not forthcoming I lost interest and moved on to the next bright, shining thing. But this time the only result I want is to extend my relatively healthy survival. And I won’t know if that result has materialized until I’m 79 and heading off on a cruise with my beloved 73-year-old Twink. On that day, if God wills, I’ll look MS in the eye and say, “BWAH-HA-HA-HA!”

Obligatory Caveat: Please do not attempt anything I am doing without consulting your physician.