Updated: Jun 22, 2021
Benjamin Stecher was diagnosed with Parkinson's Disease at 29, and has since become actively involved in Parkinson's Disease research and advocacy. He has founded a blog: Tomorrow Edition and is a patient advisor to the World Parkinson's Congress.
He is also the co-author of the book “Brain Fables: The Hidden History of Neurodegenerative Diseases and a Blueprint to Conquer Them”. Benjamin likes to call himself: “An Advocate for our big beautiful brains in both health and disease”.
How did you handle your diagnosis?
It began when I was 25 years old, that's when I realised something was wrong. But at the time it didn't seem like a big deal. It was a mild tremor at that time. As things progressed, it got worse. My aunt, who is a doctor herself, saw it and booked an appointment with a movement disorder specialist and I was diagnosed right away at 29 years of age.
At that time, it didn't really bother me because I didn't know what Parkinson’s was. My symptoms were fairly mild, it really wasn't impacting my life in great sense. It was only when things started to get worse that I started to do a little research of what I was facing and started to realise how much trouble I was in. And that's when I started taking a much more proactive approach and focusing on important things such as living in the best way possible and trying to help in the fight against Parkinson’s.
How did you start understanding more about Parkinson’s?
I searched on the internet, looked around to find out people who were working on this, found a lot of interesting projects and wrote emails. I wrote a lot of emails to researchers al around the world. Most of them didn’t reply. But a few did. I was invited to visit a lab in San Diego. That really sparked my curiosity and from there I kept going from one lab to another, probing researchers minds and trying to get a sense of what the latest and greatest in Parkinson’s research was.
I wanted to learn and understand more about the research that was going on. I realized that reading research papers only tells you so much. All papers are written with an objective in mind, of trying to be persuasive. And being persuasive can often lead to misleading representation of the research, even unknowingly. I also started to realize that while we have a lot of information about this disease, we still don’t know what we’re talking about. We still don’t have a unified language, I suppose, to describe what’s actually going on in the brains of human beings. Everybody has their own perception of things. I became very intrigued with how these researchers saw the same facts in their own way. I think that to really understand something clearly, you have to be able to close your eyes and see it in your mind’s eye. You have to be able to see the problem clearly, have a detailed mental model. Each of these researchers have their own mental model. No two researchers have the same model. And that is the reason we have failed, in some sense, to solve this disease. We don’t have any baseline truth. Nobody has proved that their mental model is the true model. And until that happens, we’re going to continue to have his fragmented view of the reality that is Parkinson’s.
In your opinion, what should we be doing to advance research?
I think we should be doing what we can to study human beings. We should have large longitudinal follow-up cohort studies. Bring together large populations of individuals affected with this disease and study them in as much detail as you can. I think we’ve been over-relying on animal models and cell-culture models to recreate this disease in a laboratory. I think it’s too complex for us to do so. I don’t think these methods capture the disease in enough detail to be able to give us a clear view of what it is just by looking at it in a laboratory. So we need to study humans, there’s not enough of that going on.
Part of the problem is that we don’t have the tools yet. We cannot see what is happening inside the human brain as we can see in cell-culture models and animal models. WE’re all limited by the tools we have today. But the question we need to be asking is “What needs to be done?”. That should be the driving question.
You've visited a lot of research programs related to Parkinson’s. Is there anything that really stood out for you?
Yes, the one that I am drawn to most is the Cincinnati Cohort Biomarker Program. They are doing a pretty detailed study of human beings. It’s a longitudinal study, in which they are recruiting five thousand people. I think that approach is very promising.There is some important work going on in the University of McGill. They are studying REM sleep behaviour disorder and trying to come up with an organoid template on which we can test drugs. I love the work that is going on here in Toronto in deep brain stimulation and improving that tool as a symptomatic therapy. Exciting things happening all over the place.
In your collaborations with such research centers, what roles do you play?
Sometimes I join as a volunteer for their studies. Sometimes I’m invited to give a talk. Other times it’s a more formal role as a consultant. It takes various shapes.
People are often hesitant to participate in research studies because they are uncertain about it’s benefits and the potential harm it might cause them. What is your approach to participating in research?
I have always wanted to learn more about Parkinson’s. I always view it as a learning opportunity. Any clinical trial that you take part in, anytime you get to interact with researchers, you will get to learn something. That’s what drives me more than anything else.
What would you say to someone who is thinking about participating in a trial but is unsure?
That’s tough. I am not in a position to advise anybody on what they should do. I would say that if you want advice, you should find a doctor that you trust and who holds your best interests in their heart. Ask questions. Don’t be afraid to ask anything, even if it seems stupid. And only make your decision if and when you’re fully satisfied with the answers you receive.
These are complex topics, and explaining them to those who don't have a background in medicine or research can be difficult. Do you think that miscommunication often causes mistrust about research?
Without doubt. Yes. That is the big part of the reason why we have vaccine hesitancy all over the world. Scientists do a poor job of communicating their work to the people. They don’t see that as a part of their job, at least most scientists don't. Of course there are those that do see it as a part of their job. I think we need to be spending a lot more time communicating and making people understand the work that is going on in the scientific community. And if people aren’t educated in a way that makes sense to them, then it’s going to lead to more of this misinformation. Everyone needs to have a basic understanding of the reality. It’s okay if they don’t understand the science. But if they have a different reality then it’s going to cause problems.
Do you recommend any sources that people can use to educate themselves about Parkinson’s?
It depends on how much understanding you have, what level you’re at. For me, it has been a website called “Science of Parkinson’s” (https://scienceofparkinsons.com/). It is run by Dr. Simon Stott, who is the deputy director of Cure Parkinson’s Trust UK. That’s been my wikipedia of Parkinson’s Research.
Start with yourself, what you know about yourself and what you don’t. Formulate questions about yourself. There are plenty of resources online.
Let’s move to you. What sort of symptoms do you face?
My biggest complaints would be tremor and rigidity when I am “Off”. Dyskinesia when I am “On”, and fluctuating on/off symptoms. I experience some shuffling of gait and slight freezing as well.
What sort of lifestyle changes did you make to adapt with your symptoms?
The biggest change I would say is stress reduction. Try and cut out sources of stress. Stress gets in the way of everything. On top of that, exercise as much as you can, as vigorously as you can. Eat as healthy a diet as you can tolerate.
The mental aspect of Parkinson’s is often overlooked. How do you maintain your mental health?
That’s a difficult question. I fall back a lot on some of the things I learnt in the past, like philosophy. What it means to be a living thing, what it means to be a thinking, rational being in the world. For me it’s about understanding what life is. You have to really embrace the fact that nothing is a given in life. Some people get 80 years and some people get 20. You have to come to terms with the fact that there are things that you can control and things that you can’t.
I suppose it also helps that my natural temperament is calm. I’ve never been one to get really angry or impatient. I can, at times, be uninhibited. I’m helped by the fact that I’m usually pretty steady and never really get too up or down.
How has your social circle evolved with Parkinson’s? Does it help manage Parkinson’s, at least mentally and emotionally?
It has definitely changed after Parkinson’s. There are now more people from the community, researchers, patients that I count as friends. It helps to have people around you that understand, at least in part, what you’re going through and are willing to accommodate for the fact that you do things differently than them.
In that sense I’ve been lucky that Parkinson’s introduced me to many people around the world that are now friends. I treasure the connections I’ve made.
In your book “Brain Fables”, you advocate a more radical approach to address Parkinson’s. One of your primary suggestions is collaborating with researchers outside of neurology to try and address Parkinson's. Could you explain that to us?
I don’t think anything exists in the vacuum. We need information coming from external sources to check our own assumptions and to add to our body of knowledge. More than anything else we need better tools to understand our brain. So I think big breakthroughs are not going to come from any one field. When we sent rocketships to the moon, we ended up building microwaves and MRI machines. So I think we can progress a lot more with a multidisciplinary approach.
Benjamin’s innate drive is exactly what our community needs. An active patient body can scale our progress like nothing else. And Benjamin’s approach exemplifies this fact. Stay hungry, keep going.
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