PUSHING THE ENVELOPE: Living full out with MS

 By Patricia Lay-Dorsey

 

In the years before I was diagnosed with primary progressive MS in 1988, I was a daily runner and had completed two marathons--26.2 miles each-'in pretty respectable times. My husband and I had also participated in several 200-mile biking weekends, and for a while I’d trained 22 miles a morning on my bike. I'd spent my childhood summers at a cottage on the Chesapeake Bay and had been a strong swimmer since the age of five. During college one of my summer jobs included teaching swimming at a children's day camp. I married a fellow who had grown up playing tennis so I learned how to play tennis. I'd always loved to dance and, in my late 30s, got very involved with modern dance and ballet lessons. During that time I also took regular exercise classes.

 All this to say I was used to having a body that did whatever I asked of it. And then I took four serious unexplained falls within a seven month period. Within two months of my first visit to the neurologist, I'd received the diagnosis--75% certain at first--of primary progressive MS. I was 46 years old.

 Getting my head around this diagnosis was not easy. Instead of having a body I could depend on, suddenly this familiar ally became an unpredictable foe. Something to wonder and worry about. What would it do next? How long would I be able to walk? What would my future look like? Everything was up for grabs. I'm sure you know what I'm talking about.

 Because I was afraid of falls, I gave up many of the physical activities I'd loved. Looking back, it seems to me I was just waiting for the bottom to fall out. But it didn't. Not for a good long while anyway. And once I started noticing muscle weakness and such, things progressed very slowly. In 1994 I started using a cane. In 1996 I graduated to a 4-wheeled walker. And in 2000 I bought my first Amigo scooter.

 During those years I continued to live a full life, and even found ways to get some exercise. In 1995, my husband found a 3-wheeled recumbent bike for me. I loved that bike because it gave me back a sense of freedom. I could get out on the road and go wherever I wanted…within reason. Weather permitting, I regularly used my bike to travel the mile to and from a bookstore where I had a part time job. And this even on the nights I closed the store and didn't get off work until 11:30 PM.

 About a year later we decided to see if I could handle riding a tandem bike with my husband. It worked great. We put a cane-holder on the back bumper and even did our grocery shopping by bike.

 But, as my muscles grew weaker, getting on and off the bike became too difficult so in 1998 we had to put the tandem away. By then I was spending my winter months in San Francisco...San Francisco with its lovely and hard-to-climb hills. It was in San Francisco that one fall too many brought a walker into my life.

 Since I'm an artist I'd already decorated my canes by collaging them with colored craft papers, so I did the same with my walker. Anything to get away from its orthopedic look! I even took to hanging things like windchimes, crystals, and other ritual items from my walker's crossbar. When I put up my own web site in 1999, I named it Windchime Walker in honor of what had become my best friend.

 During these years--years that I was definitely "pushing the envelope" by living by myself half the year in San Francisco--I still saw myself as incapable of pursuing any serious physical exercise or activity. The most I’d tried--beyond the 3-wheeled and tandem biking--had been therapeutic horseback riding. It had sounded like a great idea but after two years of sitting on a horse as it was led walking around and around a ring, I was bored to tears. I just couldn't see how this was benefiting me.

 In June 1999, I decided to take water aerobics classes at our community pool. By then it had been years since I'd been in a pool, but I didn't think there would be any problem. I got down to the pool a half hour early so I could get used to the water before we began. I chose to walk in the shallow end instead of using the disabled lift. It looked gradual enough and there were sturdy railings to hold onto, besides, I said to myself, I'm not THAT disabled. After a few minutes in the water--just enough time to walk around a little--I felt a call of nature. In trying to get out of the pool I slipped and fell, hitting my sternum and head on the steel railing. They had to close the pool due to the blood from a deep cut above my eye and even called the EMS. I did not return to the pool that summer.

 In June 2000 I decided to try again; this time I did use the disabled lift. But now I was shocked to discover that I could no longer swim a stroke. For the first time in my life I was afraid of the water. But I decided to let the water aerobics classes help me regain some strength and comfort in the water. By September I had worked up to swimming two lengths of the pool. A major accomplishment in my eyes.

 By the end of the following summer, I was swimming 14 lengths using a slow but steady crawl. That fall I enrolled in twice-a-week lap swims at our neighborhood middle school, and when I got to San Francisco for my winter stay, I signed up to swim at the downtown YMCA.

 I now swim a half mile twice a week winter and summer. I swam last night.

 In March 2004 I decided to up the ante. I joined a small gym near my house and arranged to work with Matt, the head trainer, for weekly sessions. These soon became twice-weekly, and, with alternating days of swimming, have become an essential part of my exercise regime. We have both been surprised and pleased by my rather amazing progress.

 Matt designs an ever-changing set of exercises, using machines, arm and leg weights, as well as free-standing exercises--with me holding onto a bar--like leg swings, squats and push-ups. He often has me "march" and walk both forwards (turning and holding onto the bar with one hand) and sideways. I've even progressed to using the elliptical trainer, where I stand and pedal like I'm running except I don't have to lift my feet. In the beginning it was a struggle for me to hit 50 revolutions, but in a spurt last Tuesday, I managed to climb to 74 revolutions. This kind of progress makes me feel anything is possible.

 So here I am, an athlete again 17 years after having been diagnosed with primary progressive MS. And the encouraging thing is that I keep getting stronger. Sure I don't walk very well. And I use a scooter to get around. But I feel healthy as a horse and see the future as full of promise. My body is again my friend.

***************************

---

return to Windchime Walker's journal
return to Windchime Walker's blog