(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.
There is no cure for Parkinson’s disease, there aren’t even any treatments proven to slow progression. 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. 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 find out what future therapies were on the way.
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 video 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.
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 found 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 hundreds of the best physicians and scientists on the planet. These men and women have given me hope that soon enough we will have more effective treatments for this and other diseases. This journey has also sparked a curiosity in me for the future of humanity as well as a belief that we are progressing towards a more enlightened and hospitable tomorrow. That spark became the impetus for starting Tomorrow Edition, my attempt to spread a little excitement and understanding for all that the future has in store.
The disease 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, but it is responsible for bringing light to our rock in space and giving us the knowledge and tools needed to try and make sense of reality and of ourselves. The study of the human brain, and what goes wrong with it, is our greatest and most challenging frontier, I find myself oddly grateful to have been given front row seats in our collective journey to tackle the most difficult puzzle we have ever faced.
– Benjamin Stecher
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,
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
Don’t dwell on it, do what you can to deal with it then accept it for what it is and move on to something else.
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?
The benefit of 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 that I’d suggest sticking with Western medicine.
Came to your blog via Jeremy Goldkorn’s SupChina which linked to your article about the biomedical field in China. Thank you for the enlightening interviews.
Loved the interview with Heidi!
I studied a little bit about PD during my undergraduate years and my grandfather also had the disease. It sounds pretty cool that you had the chance to tour some of the labs and see what is going on in there. I worked for a lab for 3 years, which was focused solely on making money. I would not say we were worried about helping people or at least the leadership wasn’t. I just wrote a book about my 3 year experience at this startup pharma called ‘down on the pharm’ (listed on amazon). I am always fascinated by the different opinions about research and the pharma industry. Although my experiences were not great during my years working at a pharma, I still know the majority of them are good and working for the right reasons. Thanks for sharing your story.
Down on the pharm is such an inspired title…Thanks!
Hi, I take chinese herbs, following a randomized clinical trial. And double blind.
I’ve found a therapist who has quickly made it for me. I was surprised how quick and uncomplicated
he could do it…..
Ingredients : Shu Di Huang ,, Gou Qi Zu ,, E Zhu ,, Bai Shao ,, Quan Xie ,, Wu Gong ,, Zhi
Tian Nan Xing ,, Di Long ,, Tian Ma ,, Sang Ji Sheng ,, Huang Qin.
And I will also try Irminix to get rid of Hg, who has, in my opinion, something to do with Parkinson.
A lot of greetings !
Hi BENJAMIN, name is Dr. Chris Mazzuchin, I have a bio chemistry degree a physiotherapy degree and a naturopathic medical practice I was diagnosed with Parkinson’s at 32 years old and I am now 47 . I live in Sudbury Ontario Canada just north of Toronto . I have been doing my own research for the last 5 to 7 years and have made remarkable discoveries which I have no one to share with I’d be very interested in talking with you on the phone Benjamin I will leave you my email and phone number so you can get back to me as soon as possible I am eager to share this information with the world. Sincerely, Chris.
firstname.lastname@example.org or 705-507-8542