Dr. Bradford Berk, the well-known doctor who was paralyzed in a bike accident in 2009, released a new book this week that offers guidance to others who suffer an injury like his.
In Getting Your Brain and Body Back, Dr. Berk offers a guide to address both the mental and physical health issues that follow a brain or spinal chord injury.
While being interviewed by Adam Chodak, Dr. Berk talked about the book and the University of Rochester Neurorestoration Institute, of which he’s the founding director.
Watch the full interview here:
Adam Chodak: How are you doing?
Dr. Bradford Berk: So how am I doing? I’m really enjoying myself. The COVID pandemic resulted in the fact that a lot of people moved back to town. My son moved back and it’s great being reunited with him and doing things. He’s a big cyclist as am I so we get to go biking together which is a lot of fun. And having the book come out is really exciting. I spent five years on it so it’s validation. People ask me how I felt when the book came out. Was I nervous? Was I concerned? I was like, I’m elated. Not only that but I don’t need to work on it anymore which is nice. It’s been a good summer and a lot of exciting things happening at work so I’ve been enjoying myself. Physically I’ve been in pretty good shape which is always nice to wake to in the morning and you feel good.
AC: What inspired the book for you?
BB: I actually started writing the book in my mind while I was in the intensive care unit. I realized that I have this unique perspective as a doctor, as an administrator and as a scientist and now as a patient to really enlighten people with what are the important aspects of care. The book is a self-help book. It’s designed to help people as early as can be in the whole process because it’s an enormous burden having a major chronic disease and finding the resources and making good choices, it’s not very easy. And so I said, I’m going to write a book and make it clear to people what the choices are and what they can talk to their doctors about and expect from their doctors and the medical team so I thought it would be a great opportunity to take my experience and translate it through the eyes of a doctor and somebody who ran a hospital to bring the issues to clarity and enable people to then have a plan. So a lot of the book is about planning for the present and future. I think it makes it much easier in terms of how overwhelming it is. And a lot of people miss out on their rehabilitation or don’t take advantage of what there is to offer because they just get overwhelmed and just decide I’m going to stay home, it’s safer.
AC: It seems unique in that you’re blending the physical advice along with the mental health advice.
BB: I’m glad you picked up on that. The beginning of the book is all about the psychology of an injury like this. And I didn’t realize it at the time, but I had PTSD, Post-Traumatic Stress Disorder. And I’d be sleeping at night and suddenly I’d wake up having hit my head on a beam or banged it on something and those are all recollections of what happened and it turns out when you look at all the evidence about 50% of people who have anyone of these injuries, a stroke or spinal chord injury about 50% of them have an anxiety disorder and PTSD is one and about 50% have depression and about 25% have both and so the psychology is really the earliest problem and probably the biggest problem that people face. And a number of specialists actually recommend starting their patients on anti-depressants as soon as they can medically tolerate them because it takes quite a while for those anti-depressants to work. And it’s right at the very beginning when you’re trying to recover some of your capabilities that you most benefit from therapy and if you’re depressed and not in the mood to go to therapy, you miss out on a great opportunity. So I agree with the experts. I think starting on an anti-depressant is a good idea.
AC: Correct me if I’m wrong, but there’s the underlying cause of depression, the chemical or post-traumatic stress. There’s also the conscious level too. You have hopes and dreams that align with having a certain amount of physicality and that’s mostly logical. How do you work with that change?
BB: So there’s a famous author on grief, Ellen Cooper Ross, and she goes through five stages of grieving for a loss and that’s really what you go through. There is this sudden loss, what you’ve viewed your life to be and you have to grieve for that loss and you have to recover from that grief and then you have to go and take advantage of what you have. So I think it’s perfectly normal to grieve for what happened and it’s a hard thing, you have to have an acceptance, you have to get over the psychological damage, you have to view how you’ve changed relative to the rest of your family and friends and society so I think all of those become important aspects of the first year or so, which is to grieve and once you come out of that it becomes clear what you’re options are in terms of moving forward.
AC: In that respect, do you feel like you’ve grown as a person?
BB: Enormously. Probably one of my biggest growth area was in patience. When you’re independent and fully healthy you can pick yourself up and do whatever you want, but if you’re in a big old wheelchair like this, it’s not so easy and you really do have to realize that you have to wait and wait in a way that’s not stressful because sometimes waiting is very stressful and so learning how to mellow out is pretty important. In the book I talk a lot about meditation and mindfulness which are ways you can focus your brain while you’re doing something to get rid of the stress. And so I think for me that was one of the biggest things I learned about is patience and I also learned a lot about reaching out to people, being more proactive in terms of saying hello to people. I still go back and forth in the hospital at Strong on a routine basis and I say hi to everyone as I’m going by them because I think it makes people feel good to be recognized. And I started to write about the things that embodied the things that I learned about how you and your family should be taken care of and think that was a change in me because I realized that a lot of the things that we do routinely in medicine don’t have to be done exactly at that time. The example I use is a morning chest X-ray. If you’re stiff and can’t move very well and they take this ice-cold chunk of metal encased film and prop it up behind your back and then move you around, it’s not a pleasant experience and if you’re having a rough day a good nurse or your own doctor should say, we can do it in the afternoon, we don’t have to do it now. So I think there needs to be a lot of change in the way we view medicine and making it much more attentive to what the patient needs than we do. I think everyone who goes into medicine is compassionate. We don’t have to teach people to be compassionate, but how to be attentive so they can give their compassion at the right time and not just stamp a routine on every patient, that’s a big aspect of what I talk about in the book and also what we do at Strong and Highland and the other hospitals we’re affiliated with.
AC: You’ve also helped to the Neurorestoration Institute. Any exciting elements or pieces of research or projects that have been going on there?
BB: It’s actually just starting. It took quite a while to get all the elements together. The first thing had to decide is what kind of trials we were going to do and which kind of patients we were going to focus on and so we’re actually focusing on stroke because just in Monroe County alone there’s about 1,000 strokes a year. There’s about 25 to 35 spinal chord injuries per year and for traumatic brain injury there’s this whole spectrum from getting getting your bell rung as they say in football to having your brain swell from hitting your head really hard so stroke is the focus because there’s lot of people with strokes and stroke has more stereotypical presentation so I think almost any layperson can tell if someone has had a stroke because you can see that one half of their body doesn’t move very well. So what I’m excited about is how to help with recovery in stroke. So we developed a platform which is a kind of robot that will help people regain function of their upper extremity and then we’ll combine that with other treatments to see what the synergies are across those. So the first trial will start September 1st and it includes this Tesla-like futuristic thing called transcranial magnetic stimulation where we put like a king’s crown on you and it generates a magnetic field in your brain and that unlocks the ability of your to change the way it functions, so we’re excited about that one. Ultimately, we want to have 3 or 4 trials at a time going on here and we’ll start expanding out of stroke once we have that made into a good routine. It’s a collaboration across the whole state so we’re working with a group in Albany and a group down in White Plains and we’ll have a statewide network for stroke studying this.
AC: The goal of course is to get people back up and walking whether through external means or even internal regeneration. Where are we with that?
BB: The first thing I would says is getting people back up and walking is what everybody assumes is what everyone wants, but actually you do a lot more with your hands. The quality of your life is really much more dependent on your ability to use your hands and arms and that’s actually what we’re going to start studying is upper extremity. I would say that we’re making a lot of progress in getting people up and walking, that’s actually simpler because it turned out that lower mammals like rats and mice and even dogs, they actually have build-tin systems that just work without your brain or work just with the spinal chord to make a stepping motion and help you walk and so we’re tapping into that existing system to try to stimulate it to try to make your body get restored and what’s interesting is the spinal chord is a two-way thing. Not only are signals from your brain going down to your legs and saying lift up your foot, put it down, it’s also signals from your leg going back up to your brain saying we’re in balance now, this is the right toe push, et cetera. So I think you’ll see a lot of advances in devices that facilitate that transmission and everything from artificial intelligence to exoskeletons which are like robots that you wear, all of these things are going to be tested in the next 10 years so it’s a dramatic time, I think, in neuro-rehabilitation.
AC: I’m guessing this book could be helpful to people who have suffered from something other than a stroke or spinal chord injury…
BB: I hope so because there’s a lot of people who have trouble with their brain and their body beyond just an acute traumatic event and I think there are a lot of lessons to be learned in here that can inspire those people to recover and there are many other neurologic diseases that are progressive and cause paralysis. There’s multiple sclerosis, there’s Parkinson’s, there’s an infectious one calls transverse myelitis. All these diseases share in common this paralysis and this sense of loss of function and the book is inspirational in the sense that it presents, here’s this whole series of things that you can do to improve your capabilities and you should work on improving those capabilities that make the biggest difference for you and for most people that’s getting their upper extremities to work right and you only have so many hours in the day and so much energy to do rehabilitation and so you have to work on those capabilities that are valuable to you. So I think that’s the best teaching point in the book and it’ll cause greatest improvement in the quality of life and I hope that people will be inspired to do that.
AC: What else would you like to add that I might have missed?
BB: We’re also doing a multi-disciplinary clinic. There are really three pieces to my overall goal. So we talked about the book, that’s sort of the lead-off piece that contains my own theories and ideas on how we should do neuro-rehabilitation. We talked about the clinical trials that are about to start this fall. And then the third piece is going to take a little longer is a multi-disciplinary center where people who have these neurological problems come in and get a comprehensive evaluation and treatment plan and there’s a big section in the book on all the things that go wrong with your body during these diseases and surprisingly the one that bother most people is urinating. The nerves that control your bladder frequently are damaged and results in all kinds of problems in terms of relearning how to go to the bathroom, having to have a tube or device or something to go to the bathroom. It’s remarkable inconvenient for everybody. And this center would cover everything head to toe where people would be evaluated for what problems there are and there are lots of new treatments coming and new possibilities and we want people to be able to do that and it’s also a good way for people to get into clinical trials because a lot of clinical trials are limited. There might be only 10 places in the whole country that are doing them and by having a really comprehensive diagnostic and evaluation program we can determine if someone qualifies for a particular study and it doesn’t even have to be one of the studies we’re doing. The government has a very nice clinical study website where we can recommend to people, oh, here’s a study you can do at this place or at that place so I think that will also be a really positive addition which is to have one place to go to rather than having to make 10 different appointments on 10 different days because it’s exhausting getting in and out of your car and going to the hospital and all of that so if you can do all of that in one fell swoop I think that’ll be a real benefit.