We Need to Talk About Levodopa

As much as Parkinson’s disease can be described as condition of dopamine deficiency, delivering its precursor across the blood-brain barrier where it can be converted to dopamine through a single oral tablet that also prevents its degradation along the way is a rather simple and elegant solution, and one all the more impressive for having been achieved over five decades ago.
And it’s true: carbidopa-levodopa is a fucking miracle drug. And I hate it for it.
Levodopa is why my eggs aren’t always scrambled, why my hand isn’t stuck in a claw. Levodopa is why my foot isn’t gnarled up for months at a time, why words still come out of my mouth. Levodopa is why I can get out of bed most mornings, why I can still work. Levodopa is why I am still allowed to live in your society.
Levodopa is why you don’t know that my brain is dying, while I can still feel it every second of every day. Levodopa is why you don’t know that, for every tremor that you don’t see, I still shake on the inside. Levodopa is why we can hide having Parkinson’s disease from you for as long as we can. Levodopa is why you find out that famous people have Parkinson’s only when they announce that they are “retiring from public life” – and then die shortly thereafter. Levodopa is what grants us that grace period before we drop off the cliff’s edge. Levodopa is what allows society to sweep Parkinson’s – the world’s fastest growing neurodegenerative disease – under the (d)rugs so that we don’t have to think about it. Levodopa makes us presentable, so that we don’t drool at the dinner table – right up to the point where we choke to death. Levodopa does such an amazing job of masking the symptoms that everyone else can forget about Parkinson’s inexorable progression.
Levodopa allows us to live. Levodopa will be the death of us.
And, proving that levodopa cannot stop my neurons from dying, I am suggesting something breathtakingly stupid: Stop It.
Stop spraying air freshener on your rotting brains so that others don’t have to smell it. If you can *safely* stop your medications for 24 hours, do so: go on a dopamine strike. Don’t pop any sinemet, put away the agonists, turn off your DBS. Let people know what Parkinson’s really looks like. Can’t work while off your meds? Take a sick day if you have one – you’ve been clocking in day after day while sick for years already. Can’t take a day away? Show up to work tipping over and hands-a-shaking and dare them to do a drug test, let them see how much their business is truly affected by Parkinson’s – and what they will lose if they continue to ignore it. Need your fine motor skills for an essential job? Take what you need, but wear a sticker: “I have PD and took 12 pills and 2.5 volts to show up to work today.” Not out yet? As good a day as any – show them what you have been dealing with, the painstaking efforts that you have gone through for them to be comfortable until you can no longer and they discard you.
And that’s the point: to have enough people with Parkinson’s do this at the same time so that everyone can understand the true breadth of the impact that we – and therefore Parkinson’s – have on our communities. A few thousand people shuffling off into early retirement each year can be ignored, but a million people suddenly displaying the full extent of their disability tomorrow cannot.
This can be painted as an inchoate call to action, a dangerous lashing out borne of rage and loss and frustration. And you are right, because it is. I did not put myself through cognitive rehabilitation and speech therapy just to make people feel comfortable – I want people to have their lives disrupted and forced to pay attention, to feel as distressed and disturbed by the current situation as I do in the off-chance that they might understand that this affects them, too. Our society needs to confront millions of faces reflecting itself – of every color, creed, gender, identity, and age – afflicted by a silent, spreading plague for which we have no cure and seemingly little care. And if the moral imperative of that stark fact will not force it to act, then we will freeze it in its tracks with us.

One response to “We Need to Talk About Levodopa”

  1. Thank you. I think about this everyday. I mean the effort one makes so that others don’t see how hard you try to blend in.