This morning I've woken to the news, via Digby, that the controversy surrounding Rush Limbaugh's portrayal of Michael J. Fox has crossed over to the mainstream corporate news outlets CBS and NBC. They must not have read my post yesterday condemning Limbaugh, because they're trying to be "fair and balanced" and give the guy some sort of credit for discovering, I don't know, that Michael has a terrible disease and wants it to be cured?
Anyway, all this makes me disgusted with the entire media, and incredibly sad. Sad that the treatments for movement disorders are so ineffectual. Sad that someone with a movement disorder is brave enough to go on TV—and that it takes bravery, in this day and age, to do that, and to subject himself to interviews when he's accused of "manipulating" his symptoms to enlist sympathy.
I didn't want to do this, but I'm going to get personal. If Michael J. Fox can do it, so can I.
My mom suffers from a movement disorder—not Parkinson's, although the chorea associated with Huntington's Disease is remarkably similar to the symptoms Michael J. Fox exhibited in his campaign ad. At support group meetings we'd attend with other patients, the whole room looked like we were rehearsing for a modern dance. None of us wanted to hide our loved ones, with their wild gyrations, their clumsiness, their "odd" behavior, which is what once happened to HD patients like Woody Guthrie. But you have to get used to the stares.
I remember one of our patients, whose family told how he'd been asked to leave a grocery store because he was "intoxicated." He wasn't, of course, just symptomatic, and that same night he slipped on the ice and wasn't found until the next morning, dead of exposure. The people at the store weren't knowingly cruel, not like Rush Limbaugh was the other day.
Eating was one of the few pleasures my mom had, and I indulged her whenever I could. I'd take her out, at least once a week, to Cracker Barrel, or some other place she loved. I didn't worry about what people were thinking as I tied a bib around her neck, when she spilled food on the floor, when she said inappropriate things. If they thought she was "weird" that was their problem, not mine, and no longer, fortunately, my mother's, whose cognitive abilities prevented her from internalizing humiliation.
The sad fact is, there's not much modern medicine can do for sufferers of movement disorders. The medications cause other symptoms—in the case of Parkinson's, the dyskinesic movements; in the case of Huntington's, some meds that control the movements cause the patient to become catatonic. The decision to take them depends on how much the movements bother the patient, or more often, the family members who have to put up with the stares and who pressure docs to prescribe something.
Some meds, such as Haldol, which control the stares—by controlling the movements—ironically ultimately make the already precarious neurons that much more susceptible to neuronal death. It's a no-win situation.
Will stem cells eventually cure the disease? No one knows for sure. But we do know that conventional medicine hasn't cured, or even effectively treated, HD and other movement disorders. And pharmaceutical companies would much rather find a cure for erectile dysfunction, since there are many more sufferers of ED than HD. (Around 30,000 people in the U.S. have HD, some 100,000 are at risk.) Therefore, we must depend on government research funds, as well as privately raised contributions, to find a cure, just like thousands of diseases that affect a relatively small number of patients.
Fortunately, research on one movement disorder can often lead to breakthroughs in others. That's why I cheer when Michael J. Fox calls out for more government funding for Parkinson's. And that's why my heart breaks when he's mocked for it, when his motives are questioned. His motives are my motives. We want a cure, or at least a treatment that works.
A few years ago I took my mom to a Howard Dean house party. Afterward we went to the Cracker Barrel, and she was still so jazzed by the excitement from the party that she was telling everyone in the restaurant to vote for Howard Dean. "Bush out," she'd say to them happily, forgetting she'd voted for him in 2000.
Thank god no one mocked her, or questioned her motives, or told her she should just be quiet. I think I would have hit them if they had.
I'd like to hit Rush, and all the others who joined in by questioning Michael J. Fox's motives this week. Better yet, I'd like to invite them to meet my mom, and thousands like her, who don't really give a damn about politics. They don't even know the difference between Democrats and Republicans, can't even hold a pen to vote.
If telling my personal story—and I've barely touched the surface of the pain and humiliation HD causes—convinces anyone to vote for a candidate who supports stem cell research I'll be shamelessly thrilled. Not because I have the power to change minds, or that I've enlisted your sympathy—who the hell needs sympathy?
We get plenty of sympathy, trust me—if I had a dime for every pitying look, I'd be able to buy my own ad on corporate TV. What we'd rather have is a cure. And if enough people pull the lever for someone like Claire McCaskill, one day that might just happen.