Mysterious, Elusive and Life-changing
I was ready.
After getting handed off from one neurologist to another like a burning medical baton (or some other burning medical device… help me out here!), I was ready for my appointment with the movement disorder specialist. She welcomed me into her office, asked me to walk around a little and perform a few other exercises, and then she nodded and asked me to sit down.
“You have Parkinson’s, I’m sorry to say.”
But I had already deduced this from my many previous neurological examinations and I’d done my research, so when she followed up and asked me what I knew about Parkinson’s, I was ready.
“It’s idiopathic, progressive and incurable.”
She seemed relieved that I knew something about my condition and it spared her the need to deliver further bad news. Well, more like postponed.
“Yes, that’s right but I want to schedule a DAT scan for you, to confirm this diagnosis. To rule anything else out we will also do an MRI. Do you have any questions?”
“Not right now.”
I lied. I had tons of questions but I just couldn’t think of them.
She pulled out a thick stack of pamphlets from her desk and handed them to me. “Here’s some information. You might find it helpful if you have questions.”
I dutifully took the pamphlets even though I already knew all of the basic information that was in there. After all, I had pre-diagnosed my diagnosis: idiopathic, progressive and incurable.
Idiopathic.
This is what we call diseases of unknown origin. It’s kind of a catchall phrase that gets used for all sorts of maladies and pathologies that medical science is still puzzling over. Basically, it’s a fancy word for saying we don’t know why you have what you have. When you call something idiopathic, it feels like a roadblock to understanding and it may deter efforts to discover the problem’s origins. Why don’t we call it mysterious instead? Everyone likes to solve a mystery, so let’s solve this one.
Progressive.
It’s the disease that progresses but actually the term that might be more apt is “regressive” since it causes you to lose what you have. But if I went around saying that I had a “regressive disease”, people might have gotten confused into thinking that it was going away, so that didn’t really work either. I don’t think the word pregressive exists but at the time it felt like a better fit, so I semi-officially coined it. Mind you, it is not an idiopathic word!
Incurable.
There is a searing finality to that word. When we think of incurable we usually associate this with things like cancer. Parkinson’s generally does its disease work slow and steady, gnawing at the brain until you lose the fight or the will to fight. That sounds kind of grim! I don’t like the word incurable either; I prefer the word elusive. It gives me more hope that something, someday can be done about Parkinson’s.
The movement disorder specialist had one more thing to tell me before I left her tidy office, where I just been given my life sentence.
“Oh, I will no longer be with this medical group starting next month, so you have two options. You’re welcome to follow me to my next medical group or I can find someone else for you in this one.”
I told her that I would think about it.
Two weeks later she called me. It was 6:14 PM on a weeknight. The kids were rambunctious and I couldn’t hear her well so I stepped outside the front door and sat on the cold stoop. I didn’t notice the cold at the time but later on it stuck out to me as an important detail.
“The DAT test came back and they confirmed it, that it’s Parkinson’s.”
“Thank you. Also, could you refer me to someone else in my current medical group?”
After she assured me that she would, I hung up the phone and let the tears flow.
I had Young Onset Parkinson’s disease. Mysterious, elusive and pregressive.
The word pregressive, unsurprisingly, never seemed to roll off my tongue and do justice to the diagnosis, so I started to refer to the disease as life-changing.
Let’s try it again: mysterious, elusive and life-changing.
Yeah, I can live with that. It sounds like a mountain I can climb.
