S/P R Us

by Dean Kramer
January, 2005

In bright colors showing fit, attractive and youthful models, advertisements for MS-related products seem to promise continued good health and freedom from the disabling consequences of multiple sclerosis. Each pharmaceutical company offering an MS therapy has its own stable of representatives, both celebrities and "just plain folks" with MS who speak about their experiences in maintaining a vital and disability-free lifestyle. People connected to the MS community are probably aware that there are many opportunities for continuing education about living with this disease. There are online presentations, books and magazines galore, and conferences both live and via telephone. These, too, present MS as not necessarily a threat to one's continued physical well-being. The implication is that if you eat properly, exercise regularly, rest whenever you feel the need, avoid stress and take the recommended medications MS need not be such a bad thing after all (though it's an incredibly well-situated person who can accomplish all of those things successfully).

Based on this range of encouraging information the newly diagnosed may be reassured that MS will not significantly change their lives. That's terrific but it isn't completely true.

Companies offering MS therapies promise a reduction in the number and severity of attacks for those with Relapsing/Remitting MS. They can't promise no attacks whatsoever. It used to be said that within 10-15 years of diagnosis a high percentage of people with MS would begin to experience the increasing levels of disability termed Secondary Progressive MS (S/P MS). In this state one no longer recovers completely from attacks. One may no longer even have clear attacks but may just gradually accumulate symptoms. Though some of them are being studied as to their effect in slowing its progress, not one of the current therapies promises to prevent S/P MS from developing.

Meanwhile, here on Cripple Creek, I've been living with MS for over 20 years. I now have Secondary Progressive MS. Sometimes it feels like a dirty little secret that I ought to keep quiet about—something shameful I brought on myself. Maybe I didn't exercise enough or ate the wrong things. Maybe I didn't pick the best injectable therapy, the finest neurologist or (this is the kicker) maybe I had a bad attitude.

I've felt overlooked by the advertisements, alienated by the good health and vitality of the younger MS generation, those who have never had totally disabling attacks, who can work a 50 hour week, raise a family, go to the gym daily and still find time to pursue the dream of doing handsprings across the Gobi Desert to raise money for MS research. I listen to the spokespersons' suggestions and, useful though they sound, they just make me tired. If I exercise I'll be too worn out to go to work. For me, getting dressed in the morning is a workout in and of itself. Reading of celebrities with no visible symptoms confessing they hid their MS from colleagues for fear of becoming unemployable I have to smile. What a luxury! My days of being able to hide my disability are long gone.

I rode my scooter to the mailbox the other day and found therein a brochure from one of the national organizations. Imagine my delighted surprise when I gazed at the cover and saw a woman seated on a scooter just as I myself was at that very moment. Based on the information, she's had MS for 9 years which puts her squarely on the border for developing S/P MS. The mailing was for a series of teleconferences being sponsored by one of the pharmaceutical companies. The subject—"Worsening MS."

I scooted quickly home. There, after unfolding the brochure at my kitchen table, I found pictures of others with MS. Not riding bikes, cross-country skiing, or belaying themselves across Himalayan chasms, they are shown, refreshingly enough, sitting down just as I myself am often to be found.

The copy says that worsening MS isn't often talked about. That's not quite the case. It's talked about quite a bit by the people to whom it's happening. But now, at long last, it's going to be discussed in a public forum sponsored by a pharmaceutical company. There will be a panel composed of "experts," among them, people living with the disease. The topics listed include recognizing and defining worsening MS, monitoring and treatment options, the uses of therapy (ho-hum), nutrition (yada-yada), and modified exercise (bite me) to maintain mobility and (hallelujah) the use of adaptive aids such as I, myself, have been using for several years now. (I have so a vast collection of them that friends consider me a sort of Adaptive Aids Queen.) Sarcasm aside, while I am deeply interested in learning all I can of the options available to manage worsening MS, a discussion of adaptive aids seems particularly relevant since so many of us either use them or may one day need to use them.

The brochure promises to take the subject of worsening MS from fiction to fact, from "fear to hope." It's exciting to think that those of us who are visibly disabled might no longer be absent from the advertising and treatment media and I suppose it would be churlish of me to note that this attention is coming just as the oldest generation of immunomodulating therapy users reaches the 10-20 year mark, the potential Secondary Progressive stage. Who can say what pharmaceutical wonders will be offered us in our next 20 years?

At any rate, if you are newly diagnosed be reassured. Not only may the threshold of S/P MS be delayed by your therapy, but if you reach the Secondary Progressive stage, life can still be excellent. We with S/P MS have been quietly and successfully adapting our little hearts out. We've been growing, learning, overcoming challenges, and recreating quality lives for ourselves day after day. You haven't seen or heard from us in the ads, but we're here, a vital and necessary part of the MS community.

I applaud MS LifeLines for specifically addressing those of us with worsening MS. Clutching my brochure, I hustled upstairs as fast as my stair-glide could carry me and registered for the teleconference. I'm looking forward to it. If you're interested and haven't received a brochure, call 1-800-350-5416 or visit www.mslifelines.com.