I have Parkinson's Disease
I was diagnosed with early onset Parkinson’s Disease when I was 42. At first I didn’t believe the diagnosis, and continued treating the shakiness and lack of coordination in my left hand as a pinched ulna nerve. Six(ish) months later there was no change, so I started researching PD, and all the dots connected, the research described my symptoms exactly. If it looks like a rose, smells like a rose and feels like a rose, it is a rose!
It is what it is, I can’t change it. But I can change how I react to it and how I deal with it. I’m being treated, I take medication and do regular physiotherapy and exercise. There are good days and some not-so-good days. For the most part, the illness is a mild inconvenience that so far hasn’t doled out anything I can’t take in my stride. It takes a little longer to do some things, I’ve learned how to do other things in different ways than I did before. It’s ok.
My illness doesn’t define me.
I still work – I'm a graphic designer and photographer; I still drive, I still do everything I’ve always done. And by all indications, I’ll continue to do those things for a long time to come. So I’m dealing with it fine.
This post is mostly about how other people deal with it.
Almost every time someone learns that I have an incurable illness, they tell me about a treatment that their <insert distant relative, friend or random acquaintance> had undergone. Sometimes its about an alternate medical system – ayurveda, homeopathy, Tibetan medicine, traditional Chinese medicine, magnetic pressure therapy, acupuncture, acupressure; Sometimes its a secret medicine – walnuts soaked in olive oil, a combination of rare herbs found in the mountains, etc etc.
Someone even told me I should get a dog and that petting it in a certain way would cure me of Parkinson’s. The craziest thing I heard was that I should get a horseshoe of a black horse, fashion a ring out of it and wear it on my left hand. “It’s guaranteed to work, Andy! Trust me, my aunt’s friend’s colleague is cured! My aunt says she’s perfectly normal now!”
You know, I get it. I know they mean well. I understand that people need to feel in control of things that seem impossible. They have my best intentions in mind and are frustrated with my situation and eager to offer some help, no matter how far-fetched.
But don’t. Please.
It is irresponsible and dangerous to suggest someone give up their treatment and follow an alternative ‘cure’. People seem to have an affinity for miracles and sensationalism.
A friend of mine has cancer and was inundated by suggestions, just as I am. She got sick of it and posted on Facebook:
The idea that cancer could be prevented or treated so simply is an insult to all of us who have been through truly terrible things to get rid of cancer, and all the hard-working, well-trained people who used real medicine to help us do so. Yes, we'd all love it if there were some simple, magic cure for cancer. But there isn't. Not now, maybe not ever, because "cancer" is thousands of different things. Why does it matter if you share this stuff? Because many people believe things that they see in print, and don't know how to evaluate the trustworthiness of sources. Some will get cancer themselves, and may make poor choices about their own treatment because “I read something on the internet that said you doctors just want to make me pay a lot of money for expensive treatment.” And they die. Steve Jobs was a smart man, but he thought he know more about cancer than his doctors did. He was fatally wrong about that. And he's not the only one. Please do not be part of this.
That’s how I feel exactly. I’d love it if there was a simple, magic cure. I’d love it if there was just a cure, simple or complicated.
But there is no magic. The magic is science.