Here is the video of the recent session where I shared my health journey at SXSW. Titled "Biohacking for a Healthy Brain", my goal here is to share some of the approaches that have helped me in making Patient Empowerment more than just a buzzword. I hope you enjoy the talk and would love to hear what you think!
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Biohacking for a Healthy Brain
Mar 10, 2019 at SXSW
I really appreciate the invitation from Dana to come tell my story here at South by Southwest. My health journey really began in earnest some four years ago with something innocuous. I fell out of bed. I was moving around at night, talking in my sleep, flailing a little bit, and even punched my wife once. I thought that was bad, but didn't think much about it. It was the kind of thing you talk about at a dinner party, "Oh, Brian fell out of bed—wasn't that sort of funny?" But it happened again, and the punching happened again, and then one night, I was having this dream that's a recurring dream I've had where I'm trying to catch a basketball that's rolling out of bounds, and there's this urgent need to grab the basketball. I'm paralyzed in the dream, but suddenly I break through the paralysis and I leap over and grab the basketball. Only I wake up and I'm holding my wife's head rather tightly. And she's saying rather firmly, but quite calmly, "Brian, Brian, you're dreaming, wake up." I was acting out my dreams. At that point we realized this is not normal. Something's going on here.
And like most health journeys, my next stop led me through Google to try to learn about this. And I was able to access credible information, from the Mayo Clinic and others, and identify that I have a neurological disorder called REM Sleep Behavior Disorder or RBD.
It's an unusual disorder, but it's not that rare. A neurologist at Stanford the other day told me he thinks maybe 1% of people have it, which means millions upon millions of people. But my talk today is not about RBD, although we could talk about that, but in the limited time here, I do want to talk about biohacking, but I want to talk about it more in a context, because there's only so much in our time available that we can cover. So today is not really about all of the detailed ways I have adapted to my condition, although I am happy to share a lot of that, some here now and some I can share online as a follow-up. I do have a website, www.citizenscienceforhealth.org, and I'll be posting something in the days and weeks ahead to share more detail than what can fit in a short presentation here.
I really only have time here today to convey one thing: And that's really the importance of Patient Empowerment, not as a catchphrase, but as a real visceral experience. And I should preface this by saying I'm not a doctor, I'm not a scientist, I'm not a researcher. Nothing I say today should be taken as medical advice, certainly.
I'm here as a patient. I’ve been a little reluctant to identify myself as “a patient” in that way, but I've come to find that being a patient really is a noble and an important thing. It's like being a citizen in our democracy. But like our democracy, which is supposed to be by the people and for the people, our healthcare system, which is supposed to be, and gives a lot of lip service to being for the patients; the people or the patients often get lost in the shuffle. So that's why there's a Patient Empowerment movement. That's why it's gaining steam. That's why it's so important, and it's that importance that I want to address today.
Also, Patient Empowerment is a journey. And the next steps on my journey were challenging. I woke up in the night a few days after doing that initial research out of a dream. I was in extreme pain, I was covered in blood, I had stood up while dreaming and fallen against a desk. One can get injured that way with this illness. I started to fear going to sleep, but then I discovered something else that I feared even more. You research RBD a little bit and you find it’s caused by a misfolding protein called alpha-synuclein in a part of the brain. Well, that turns out to be the protein that underlies Parkinson's disease and a lot of other serious neurological disorders. And I was told, first by Google and just sitting there at my desk and then later by a neurologist, that I have an 80% or 90% chance of developing Parkinson's, and a 50% chance of that happening within a few years of diagnosis. So that was definitely an "oh, shit" moment to get that kind of information. But I think it's instructive in a way, because we're all going to have to deal more and more with risk information. As genomics comes into our medical information, we're all going to get, "Oh, you have this percent chance of that, or that percent chance of this," and learning how to hold that psychologically is a key factor in our brain health.
Alan Alda recently talked about his experience. He had the same kind of sleep problem I had—he was throwing a bag of potatoes across the room and it turns out he was throwing his pillow at his wife. And he read a piece by Jane Brody in the New York Times that said there's a connection between RBD and Parkinson's. He went and got tested and discovered he has Parkinson's disease. I so far do not, but I am on this journey, and I'm an optimist, and I think optimism is really important here. They've done some studies that say optimists live seven years longer than pessimists, but for me, I'm doing everything I can, and this is where the bio-hacking comes in, to be part of that 10%-20% that don't convert to a more serious condition.
Beyond the risk factors, we all also have to deal with the healthcare system itself. And just to say a word about that—I had to fight to convince my doctors that I had what I had, even though I knew what I had. The neurologist needed a referral from my doctor and my doctor didn't know anything about this stuff at that time. But he wrote a referral and then the neurologist wanted info from him, and he didn't have anything to give them and finally, they said they'd see me, and it would take so many months and no one wanted to pay for the sleep study that would really prove this. You know, at a certain point I threw up my hands, just like, "Well, thank God I'm not really sick!" It was really a runaround, and part of that, the silver lining there, is that it led me to explore the world of clinical trials.
Part of my message today is that clinical trials are great. Clinical trials offer huge possibilities. It's not just about placebo, sugar pills and new pharmaceuticals. There are people doing all kinds of trials to try to understand disease better and understand the impacts of lifestyle medicine, like diet and nutrition. The neurologist that I first went to is actually here at the University of Texas Medical Center in Houston. She was studying me to get information to help the problem, to understand this disease, but she was also a place I could go for work-ups to see progress over time, and to ask my most burning question, which is, well, “What is neuro-protective? What will protect my brain, our brains?” And on one level, like most doctors and scientists, she's like, "Well, we don't really know yet," but she would go further to talk about “The Basics” and the things that are called “Basic” for a reason.
—We start with Exercise, strenuous high-interval training or other exercise that's serious, can make a huge difference.
—Diet, obviously, is very controversial, there are all kinds of different topics there. We could spend a whole session on that. But eating lots of vegetables and not being like the average American who eats 66 pounds of refined sugar a year—those are starters, and those are what you would call basics.
—Sleep hygiene, going to bed early, being in a cool dark room, doing things for your sleep.
—Reducing your stress.
But then the basics expand beyond one's physical brain. We're social beings. How we socialize, how we intellectually stimulate ourselves, learning a language, music, whatever, how we deal with our psychological issues, our depression, our anxiety, all of those things are critical, but they're really only a part of the story.
There is a huge array of things that people are experimenting with and trying. My definition of biohacking for this session really is “any self-experimentation one is doing to enhance one's health”.
I would also say it's generally done with an attitude of reaching for the optimal rather than the normal. We will almost all be told, "Oh, that's normal aging. Oh, you forgot somebody's name or you walked into a room or this or that." And yes, that's what normal aging looks like, but I really appreciate the folks that have really pioneered this field, folks like Tim Ferriss and Dave Asprey of Bulletproof Radio who have really set that standard of striving for what is optimal, not what is just normal.
Given our time today, I can just go over some of the areas where tests are going on, and detail will have to come as a follow-up. But areas like:
—The Microbiome, obviously there's a huge gut-brain connection with neurological issues.
—Fasting, the work of Dr. Satchin Panda, who's a researcher in this area, time-restricted eating in his case. Valter Longo of the fasting mimicking diet has done incredible research about fasting, which helps overall health. But generally, if it helps your overall health, it helps your brain health.
—There are people doing studies with temperature, hot and cold saunas, showers, light, electricity, magnetics.
—Dale Bredesen is doing incredible work on detoxification that relates to Alzheimer's but is also relevant here.
—Acupuncture as a practice.
—All manner of supplements from NAD-based supplements to CBD, all manner of vitamins, all of these things are being experimented with by folks.
—And optimism and positive thinking and the placebo effect.
These are all methods that people are using and we don't have time today to drill into all of them. We can recognize that they're all controversial, except maybe exercise at this point. And they're all areas where science is evolving and we as individuals have to deal with that.
I want to share three keys that have worked for me in dealing with this:
1. First is conduct your own experiments, recognize that we are conducting experiments. They talk about the “N of 1” study, where you are that one, you are that participant in that study that you are doing in your life. That's empowering for us as patients and as healthy people as well, to recognize we're making a choice and we're choosing where we sit on a continuum, right? There's a continuum from today's standard of care. If you go to your doctor, one of my neurologists says, "Look, you don't have movement symptoms today, come see me in two years if you do." I mean, there's no real standard of care for what I've got in that way. And we all have to find this future standard of care, the practices that work for us, and it's another reason I want to say clinical trials are so important, because that's where these experiments become real science, this is where they get proven—it is through real clinical trials.
2. The second key, I would say, is not to obsess. Obviously, it's easy to obsess about these kinds of things—early on. I got into overdoing it. More experiments, more of this, worrying about that, what about measuring this. At a certain point, it's like my dad used to say, “we eat to live, we don't live to eat”. And it's kind of like that with biohacking, “you biohack to live, you don't live to biohack”. You biohack, you do experiments to have a better, more vital life. And that's the important part to remember. It's taken me some time to get that.
3. But the third and most important key, I would say, is following your gut feeling, but I don't mean gut in terms of the microbiome, I mean in terms of that sense of health and well-being in ourselves that is our birthright. We all can access it one way or another, and to let that be our yardstick. When I wake up in the morning and I've done my fasting overnight and go do my hill repeats and then come back and have my nutritional smoothie concoction and meditate. All of these things, they feel great, I feel really good, and tuning into that and embracing it and being grateful for it, is a huge factor in our brain health.
I've been lucky, my circumstance is well under control with a high dose of melatonin, and these various practices. I still have it. I was up out of bed last night here in the hotel room. It's not gone, but it is much, much better and much more under control. That leads me to want to give back, because I've had excellent care. A lot of people don't get that same access, so that's why I'm here giving this talk today, and why I created something called Citizen Science for Health. It's a small non-profit that's focusing on the progress that's needed in the area of neurology.
I don't know if anybody saw Maria Shriver here on Friday, but it is really powerful work that she's doing with the Women's Alzheimer's Movement. We are on the cusp of a tsunami of neurological disease —both Alzheimer's and Parkinson's, and others, and care and research are lagging behind what's happening with cancer, so we all need to do more. I'm certainly going to do all I can.
And I understand that in this time together today, there's not a lot of details on these methods. I will post blog posts in the coming days and weeks ahead to share more, because I know some of you here want more of that level of detail. I'm happy to share more about those experiments.
Also, I'll be available in the back of the room, or outside afterwards and I'm happy to connect with anybody else who's interested in talking about this health journey. Thank you very much.