(Image above is me on the right with Dr. Tilo Kunath in his lab in Edinburgh staring at induced pluripotent stem cells)
In November, 2013 I was diagnosed with Parkinson’s disease. I was a 29 year old kid doing quite well for myself living and working in China when I got the news.
Tomorrow, and tomorrow, and tomorrow,
Creeps in this petty pace from day to day,
To the last syllable of recorded time;
And all our yesterdays have lighted fools
The way to dusty death. Out, out, brief candle!
Life’s but a walking shadow, a poor player,
That struts and frets his hour upon the stage,
And then is heard no more. It is a tale
Told by an idiot, full of sound and fury,
There is no cure for Parkinson’s disease, there aren’t even any treatments proven to slow progression. PD results from the accumulated death of dopamine producing neurons in a part of the brain that primarily controls movement. When you get it, you have it for life, and the only thing you know is that things will get worse as time goes by. Given the state of medical science at the time of my diagnosis my fate looked something like this – proper medication, healthy diet and regular exercise should keep me relatively normal for the next 5 – 10 years, after which I would probably undergo DBS (deep brain stimulation), to have electrodes surgically implanted into my brain which should buy me a few more good years.
But I didn’t know any of that when I was first diagnosed, so initially it didn’t bother me that much. My symptoms weren’t that bad and I believed that I could continue living as though nothing had really happened.
But they don’t call this disease degenerative for nothing, over time my symptoms progressed to the point where I felt the need to take action. I moved back to Canada, giving up a promising career in China, to not only learn how best to manage my health, but also to find a way to get involved in some of the research being done.
At first I didn’t really know where to turn to, no one I knew had it nor had I even heard of anyone with it outside of Muhammed Ali and Michael J. Fox. I remembered a video of Ali lighting the torch at the Olympic Games in Atlanta and seeing his quivering hands as he lit that giant flame. Most people probably look at that moment as a defiant act of courage from this great man who had conquered the world and not let anything stop him from getting what he wanted out of life, not Joe Frazier, not the United States government, and not Parkinson’s disease. But what I now saw when I looked back at that was the future I was doomed to live, hands trembling, frozen expression on my face, barely able to walk properly, probably reliant on a myriad of different pills just to make an appearance.
It’s not easy figuring out how to move on with life as a young man faced with that kind of fate. The thought that one day soon I was going to need a metal rod shoved into my brain just to function, that I’ll never be able to go anywhere without a loaded case of drugs handy, that I’d be spending my time going from clinic to clinic making sure that the last specialist knew what he was talking about, that not only did I not know what was going on inside me but no one really does, well, suffice it to say, it was a lot to take in.
So, where to go? Who to talk to? At any other time in history the best I would have been able to do is travel for miles to the nearest specialist (or witch doctor) and rely solely on whatever ill-informed advice he or she would have had for me. But we live in remarkable times and I soon realized I had more resources at my disposal than any king or emperor had ever dreamed.
To the internet I went where I soon saw that there were people all over the world working diligently to fix what was ailing me – patients and physicians and researchers in seemingly every corner of the world, each with their own story to tell and advice to give. And with email addresses to boot! So I began reaching out to people, telling my story and asking them if they would tell me theirs.
I have since toured some of the top research labs in the world and met with over a hundred of the best physicians and scientists on the planet. These men and women have opened my eyes to some of the incredible advances we have recently made into our understanding of our biology and given me hope that soon enough we will have more effective treatments for this and other diseases. They have also sparked a profound curiosity in me for the future and a belief that we are progressing towards a more enlightened and hospitable tomorrow. That spark also became the impetus for starting this blog, my attempt to try and spread a little excitement and understanding for all that the future has in store.
Parkinson’s itself continues to suck, but I do have it to thank for everything I’ve learned since being diagnosed. The information age and this disease has enabled me to get my foot in the door into places I would otherwise never have been and connected me to people changing the world. It has also given me the chance to observe science in action as it pushes forward a frontier of knowledge. Science is an imperfect process, largely because it is a product of our own imperfections, but it is responsible for bringing light to our rock in space and has given us the knowledge and tools needed to try and make sense of reality and ourselves. The study of the human brain and what goes wrong with it is its most challenging frontier, and I am oddly grateful to have been given front row seats to watch it in action.
– Benjamin Stecher