When one of my best friends was diagnosed with multiple sclerosis eight years ago, I knew almost nothing about it—it was simply a name to a vague disease, probably something pretty serious. The name itself doesn’t even mean much. Not like muscular dystrophy, say, which you could probably guess has something to do with muscles degenerating and getting weaker. But MS?
A few weeks after my friend’s diagnosis, I sat down to watch Hilary and Jackie on DVD. I was taking cello lessons at the time, and all I knew about Jacqueline du Pré was that she was a cellist. I didn’t know that she was diagnosed with MS in the last 15 years of her life. I didn’t know that it paralyzed her, or that it stole her hearing, her sight, and finally her life.
This was not a good way to learn about multiple sclerosis. I went through a lot of Kleenex that night.
The good news is that MS is much better understood and more manageable than when du Pré first began losing sensitivity in her fingers in 1971. Today, people diagnosed with MS have normal or near-normal life expectancies, and there are many drugs to help people manage both the disease and its myriad symptoms. That doesn’t mean it’s pleasant to live with—but it does mean that it’s not a death sentence.
Multiple sclerosis is an auto-immune disease in which the body attacks myelin, a substance that covers and protects the nerve fibers in the brain. Myelin helps your brain send nerve impulses, so when the body starts attacking itself and destroying the myelin, it disrupts impulses to and from the brain. Damage to myelin causes scarring—sclerosis—and multiple scars in the brain, over time, cause greater nerve damage and greater disruption.*
In ordinary life, this translates to a large number of symptoms, some of which may be blown off or easily misdiagnosed. Things like poor coordination and balance, difficulty concentrating, or depression—all common MS symptoms—might make you think that you’re just slowly going crazy. Most people, including my friend, have a type of MS known as relapsing-remitting, which refers to constant cycle of flare-ups and recovery. There’s no predictability to these cycles, no way of knowing when the next attack will come, no way of knowing how long it will last. The longer recovery time (remission) between flare-ups (relapses), the better. If the cycles get shorter, the flare-ups more frequent, a person with MS could slip into a secondary-progressive stage, in which the symptoms become steadily, increasingly worse.
Multiple sclerosis is incurable. There are several drugs available that work to actually manage the disease, not just its various symptoms (those require a whole ‘nother medicine cabinet). Hopefully this kind of management will help keep exacerbations at bay for relapser-remitters like my friend, and slow the pace of this disease to prevent the kind of degeneration that Jacqueline du Pré suffered.
* I’ve learned a lot about MS these past eight years, but I’m no doctor. I checked my facts here, at the very place I’m asking you to make a donation to!
