April is Parkinson’s Awareness Month, and it’s my sixth. I’ve been painfully aware of Parkinsons for only that long. Six years – I have bottles of mustard in the refrigerator that are older (little known fact – mustard apparently doesn’t spoil, and in some Old World countries unused mustard is passed from father to son for generations. Look it up – would I lie?).
Before I was diagnosed, Parkinson’s was just another of the many relatively rare diseases that I knew very little about. Tourette’s – isn’t that the one where people have outbursts of foul language? Huntington’s – runs in families. Essential tremor – Kathryn Hepburn. Parkinson’s – old people who shake, and Michael J. Fox. Six years, roughly 17,500 Sinemet tablets and three DBS batteries later, I know more, but still very little. The reason is simple – no one knows what causes PD, and although we are getting smarter all the time (I say “we,” but I really mean ”they”), a cure is not imminent. Even if there were a “eureka” moment in a lab somewhere tonight (I envision a lone researcher, working feverishly in a darkened lab illuminated by a single desk lamp. She swirls a test tube and the contents turn red instead of blue. “That’s it!” she shouts. “Call the NIH!”), by some estimates it would be eight to fifteen years before the magic bullet hit the street.
That’s not necessarily because the process is broken, either. It takes a long time mostly because careful science takes a long time, and careful science protects people’s lives more often than revolutionary cures do. The alternative is being surrounded by zombies, alone in New York City with only your German shepherd, hunting deer from the driver’s seat of a Saleen Mustang. Or, on a less Will Smith-y and much more somber note, the alternative is another Vioxx; another Fen-Phen; another thalidomide.
I’m sure there are inefficiencies, but bringing a new treatment to the people who need it takes a long time so we don’t inadvertently kill people while we’re saving them. The problem from my limited perspective at the very end of a very long pipe, is that there isn’t anything going into the pipe that may eventually come out the other end 15 years later. I’ve recently asked someone much smarter than me if there any prospects for a cure in the next 5 to 10 years. The person that I asked is well-positioned to know, and invariably tells the truth even if it’s unpleasant and painful. He didn’t even answer; he just shook his head.
Awareness is a funny thing – it doesn’t actually bring you anything. All the awareness in the world about Parkinson’s, Huntington’s, essential tremor, dystonia, or any of a host of neurological disorders that we just don’t understand will do nothing to solve the problem if it’s not accompanied by action. Awareness is self soothing – it provides the illusion of having an impact on events without the necessity of actually having an impact. “Yes, I am aware that there is genocide going on in Somalia. Terrible. Pass the roast beef, would you, please?”
Awareness is valuable when it is followed by action. So, for me, this April and every April to follow until my last April will be Parkinson’s Action Month. If you’re inclined (and I suspect you might be, if you read this blog regularly), be aware, and ACT on your awareness. Walk or run in support of research, and form a team or obtain sponsors. Comfort a friend who needs it, and instead of saying “let me know if you need anything,” ask, “Can I bring you dinner on Thursday? There’s a new exhibit at the McNay – wanna go with me on Saturday?” Learn and be aware; then teach. Then, come together and act.
Money and research is important, but connectedness and community is just as important. Money and research will eventually enable us to find a cure. And our connectedness will help us get through this night, and the next. The American Parkinson’s Disease Association says it very elegantly – their stated mission is to “ease the burden and find the cure.” We may not be close to a cure for PD; on the other hand, there may be one discovered tonight. In the US alone, however, there are more than 1 million people with PD that have to get out of bed tomorrow, and use the gift of life as well as we can. We can’t rely solely on the hope for a cure, but while we anticipate one, perhaps we can rely on each other, and on you.
And if we can ease the burden, maybe we can make the road to a cure easier to walk.