About

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(Image above is with Dr. Tilo Kunath in his lab in Edinburgh staring at induced pluripotent stem cells) 

November 30th, 2016 – New Haven, Connecticut

I was in a doctor’s office lying on my side with my knees tucked into my chest while behind me a neurologist was inserting a catheter into my spine. For forty minutes he dug around in my back extracting cerebral spinal fluid. Almost every time he reinserted that little tube it would trip a nerve that sent a jolt of pressure and electricity into one of my ass cheeks or all the way down to my feet. The discomfort kicked my tremors up into fifth gear and caused me to break out into a sweat as a sweet southern nurse practitioner tried as best she could to distract me from what was happening. As I lay there while transparent goo that my body made to protect and nourish my brain was slowly being sucked from my spine I started questioning why I had volunteered for this.

PWPD

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 suddenly I became a PWPD, a Person With Parkinson’s Disease.

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 parts of the brain that primarily control movement and mood. When you get it you have it for life and the only thing you know is that things will get worse and 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 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 do I not know what’s really 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 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 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. At no other time in human history would any of that have been possible. Amid all the strife and stupidity we seem to be surrounded by in the world today, it is important to acknowledge that we live in remarkable times.

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 whose work will change the world. It has also given me the chance to observe science in action as it pushes forward a frontier of our knowledge. I have toured some of the top research labs in the world and met with some of the best physicians and scientists on the planet. Those men and women have opened my eyes to some incredible things happening in the world and sparked a curiosity in me for the future and hope that we can build a better world. That spark became the impetus for starting this blog, to try and communicate the research I have come across and to spread my excitement for the world of tomorrow.

 

 

 

9 Comments

  1. Sudhakar says

    well written article. thank you
    I am suffering from PD for last 3 years. I am 42 yrs now, live in India

    I keep thinking of PD every second, thinking about my future

    Like

  2. Joseph says

    Great attitude and excellent insight! Keep up with the good work!!
    I was diagnosed with PD four years ago when I turned 49. I just asked my neurologist sign me up with the movement disorder clinic and have started my 2-years waiting journey.
    You had been in China for 6 years. Any insight on Chinese medicine tackling PD?

    Like

    • The good thing about Chinese medicine is that it emphasizes preventative care through healthy habits but it is not nearly as useful when it comes to actually treating diseases, for those I’d suggest sticking with Western medicine.

      Like

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