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Alison Stewart: This is All Of It. I'm Alison Stewart, live from the WNYC studios in Soho. Thank you for sharing part of your day with us. Now we'll turn our attention to the brain and particularly what happened to the brain when it goes through some trauma, a stroke or an aneurysm, or anything that impacts all that gray matter that controls how our bodies function.

For some perspective according to the CDC in 2019, more than 200,000 people were hospitalized because of brain injuries with 13.5 million people in the US estimated to be living with disabilities resulting from this kind of injury. These injuries can affect mobility, speech patterns, or cognition in ways that are frustrating and daunting. Think about spending your life navigating that relationship between your mind and your body and then suddenly that relationship is different.

Patients undergo treatment-- who go undergo treatment have to put in a lot of physical and mental effort, and it can be an isolating experience which is the opposite of what some of the science says can enhance recovery. The lack of these social supports are something advocates are fighting for more of, more social support. Including my guest in this conversation, we have here with us in studio Jenny Clarke, the co-founder of an organization called SameYou. Jenny is the mother of the co-founder of the group actor Emilia Clarke of course of Game of Thrones. After filming the first season of Thrones, Emilia suffered a brain injury and went through a trying though pretty much complete recovery. She and her mom founded the organization in 2019 after seeing how much support these patients needed and weren't getting. Jenny, welcome.

Jenny Clarke: Thank you very much. It's a pleasure to be here.

Alison Stewart: Also joining us now is David Putrino, a neuroscientist and Director of Rehabilitation Innovation at The Mount Sinai Health System who has done some think outside the box work in this area. Nice to see you.

David Putrino: Thank you for having me.

Alison Stewart: Please welcome back to All Of It. Our former New York Public Radio colleague, classical music presenter, Clemency Burton-Hill. You may remember Clemmy from way back before the pandemic when she presented a series on this show called All Things Classical.

Clemmy Survived a brain injury in early 2020 that changed her relationship with music. We'll ask her to talk a little bit about that but this segment was her idea. Clemmy, welcome back, and thanks for getting us all in the same room for this discussion.

Clemency Burton-Hill: Thank you so much.

Alison Stewart: When I saw your email I was so happy that I was going to get to connect you with you even if not in front of microphones, off microphones too.

Clemency Burton-Hill: It's so wonderful to see you and hear you and be here.

Alison Stewart: Listeners, we want to get you in on this conversation. If you are someone who is recovering from a traumatic brain injury or have watched a loved one go through injury and or recovery, we'd love to get you in on this conversation and open up this space for you 212-433-9692, 212-433-WNYC. Our social media is available to you as well @allofitwnyc.

Maybe you want to speak to what is challenging about this or what's challenging about it or what changes you'd like to see made that could have made things better for you and your family. We also have a neuroscientist, an advocate, and someone with real-life experience here and they're all excited to be having this conversation with you. 212-433-9692, 212-433-WNYC, social media is @allofitwnyc.

Dave, I'm going to ask you to start as our scientist. Can you explain what it means for the brain to suffer an injury?

David Putrino: We can keep this fairly simple. An acquired brain injury happens when a bolt out of the blue occurs. It can be a stroke, it can be a traumatic brain injury. It can be a concussion. Usually, we're talking about mechanical damage.

Whether that damage is occurring because a blood vessel has burst or a blood vessel has been clotted or something more direct like you're in a car accident or you took a blow to the head. The outcome tends to be the same in that your brain goes through an enormous inflammatory process. There's bleeding there's a mess occurring.

Brain cells die and depending on where in the brain those brain cells die, you get a mix of different impairments and disabilities that can change the way that you have to live your life. One of the things that is spoken about a lot is we're very good at dealing with the acute care. We are very good at saving lives and doing the surgeries that get people in a place where they don't die from their injury. What we're pretty bad at is all of the things that happen after that. How do we navigate life after that? I think that's why we're here today.

Alison Stewart: Clemmy, I know people will remember you obviously from the show. When we come on we would talk about classical music. You've been very kind to offer to share a bit of your personal experience. Could you explain what happened to you on January 20th, 2020?

Clemency Burton-Hill: It was a very normal Monday morning. I was trying to get my kids who were at that point, one and five out of the door. It was actually MLK day, it's supposed to be a holiday but obviously, as a workaholic, I was about to go to a meeting to do something work-related. My lovely amazing saintly husband said he would take the boys to the science museum over the river to New Jersey.

I went to Brooklyn and I met someone who I'd never seen before. It's just a work meeting and completely normal at that point. No headaches, no blurred vision, nothing. I was speaking I suddenly realized that something was terribly wrong. I started again. I thought what the hell is that? I'll start again. I'm like you. I've been in broadcasting and communication for my whole life really but for professional two decades.

I can speak and suddenly I really could not speak. I knew at that point I had cognition and or consciousness that I was still normal and me. Something was totally as David said bought from the blue. The next thing I woke up 17 days later in hospital, half of my skull missing, many of my loved ones suddenly at the bedside. I thought hang on a minute. Is this just some very odd nightmare, literally a nightmare?

I went to speak as if I had woken up, it's my husband on the other side of the bed say, "Oh my goodness, such a weird and horrible dream." I went to speak and there was no language left. It took a long time to be even able to speak like this. My unbelievable neurosurgeon, David's colleague, Dr. Kellner did later say to me that it was pretty remarkable for where the damage as David said if it's dead, it's dead.

It was a big, big, big portion of my left hemisphere just dead but neuroplasticity and the brain is remarkable. The fact that I can speak at all is something to be hopeful for.

Alison Stewart: Of course. First of all, thank you for speaking. I know it's hard and you're very brave. You said this was okay that we play a little bit of tape from one of our earlier conversations. You're still okay with that?

Clemency Burton-Hill: Of course.

Alison Stewart: I just wanted to check in. This is a clip from March 2019. We were talking about the music of Béla Bartók. Then we can talk a little bit on the other side and bring Jenny into our conversation.

Clemency Burton-Hill: You have these renegade mavericks come along in music like Arnold Schoenberg for example and shake the tree really hard on what harmony even is and why are we all playing around in the same structures that people have been doing so forever? Why don't we just tip the whole thing on its head? He has this interesting musical perspective of being able to see and incorporate the past. Being very receptive to what's happening at that moment in the present but then he also brings this, I would say, very special source to proceedings.

Alison Stewart: As you said, we've both been doing this for a really long time and we know about communication, our voices, how we communicate with people. When you think about your recovery and you think about the way that your voice has changed and this is sounds like a dumb question but I would say what kind of frightened were you? Not, were you ever frightened but what kind of frightened were you?

Clemency Burton-Hill: First of all I think those are no dumb questions. I think the world will be easier for everyone if people don't feel like they can't ask so thank you for that. There is no language to find that and that's not because of the brain injury, it's just it's beyond language. It's kind of sometimes I think of those poor humans in Pompei who are literally seeing the lava coming and being buried alive.

It feels like that, it feels like not being able to communicate. Of course, there are many other things like walking and talking in terms of functional but just that sense of will I ever be able to be? Is it me? Can I be me if I can't communicate?

Alison Stewart: Jenny, this must have been an enormous learning process for you as a mother. What were some of the things that you have learned about brain injuries that you just really never understood until you had to help with your own daughter's recovery and her journey?

Jenny Clarke: One of the most shocking and amazing statistics is that one in three people will actually experience a brain injury at some point in their life. That is huge. What's equally shocking is that people don't talk about it. People don't know about it and when we put it on our website, people wrote to us and said this isn't true. You're not actually being honest with us.

I think the huge piece of work that needs to be done to really generate awareness because this is something that happens and the result of brain trauma is so varied and it's really complex. What we are trying to do is to draw attention to it. Because we are not clinical, we're not medical, we're just regular people, and it happened to us we just really want to make sure that we can help and be one of the small cogs in a wheel that actually changes the situation because there just isn't enough help.

Alison Stewart: What's an example of a change you'd like to see?

Jenny Clarke: I think that the work that we're starting to do with David and Mount Sinai and with wonderful Clemmy who is generously being a trustee of SameYou charity, the thing that we see is social isolation. Particularly Clemmy was very young when it happened to her and my daughter, Amelia, was 25 when she had her first brain hemorrhage. She's had two brain hemorrhages and strokes.

What we see from the thousands of people who have written to us is that when you are young you haven't almost worked out your own identity. People associate brain injury and stroke with older people and really, sadly and tragically, that's not true. It's just very, very different to think about your life chances and your life experiences being completely altered in some cases or even just in fact everybody that has a brain injury they do find that their life is never the same again because it is an absolutely traumatic experience whatever happens to you.

Alison Stewart: David, you've described people living with these neurological issues from brain trauma. Some of the work that has to be done, there's the exoskeletal part of it, there's the brain stimuli part of it. There's speech therapy. Would you mind giving us an example of each?

David Putrino: Yes, absolutely. My lab at Mount Sinai is very much focused on bringing new technologies to people who are recovering from brain injury and other forms of neurological injuries. In terms of physical rehabilitation, we explore things like exoskeletal robotics and try to make those mainstream therapies that can help people recover. In terms of technologies that really try to approach the neuroscience of recovery.

We do things like invasive brain stimulation and non-invasive brain stimulation where we try to electric shock the neurons back into a more neurotypical pattern of functioning. Then in terms of speech therapy and other physical rehab we work on things like Telerehabilitation. That people who may not have the benefit of being able to come to a location for their care can still get a very high standard of care outside of the hospital.

We investigate all of these techniques and technologies and we are very proud of what we do but we're equally proud of the work that SameYou is doing. My very good friend who's a disability rights activist, Steve Spawn, he always talks about the idea that we have two modes for disability, we cure it or we pretend it doesn't exist. There's nothing in between. We are always hearing about charities that want to cure things.

We're never hearing about charities that want to actually head on, say, "You know what? Maybe I'm not going to be cured but I don't belong," put off in a corner somewhere being isolated from the world. Not having the opportunity to explore my identity or express my identity as a new person who now has a disability. That's what SameYou is doing. In the meantime, it's combating social isolation.

We know that social isolation is a person who is lonely. The health effects, the physical health effects are the equivalent of smoking 17 cigarettes per day. Just think about that as a statistic and yet we don't view that as a crucial part of caring for people with a brain injury who are often socially isolated or lonely.

Alison Stewart: I was watching a TED talk that you gave and at the end, you said this isn't woo-woo. This idea of people need to be around people to heal and recover that there is science behind it, that this is really, really important that people for lack of a better word, have a good time in their recovery that they look forward to. They're around others. Could you share a little bit about that?

David Putrino: Yes, absolutely. In our lab, we talk a lot about how to best stimulate neuroplasticity. We know that the brain has the ability to change itself. We know that that can be a huge aid to rehabilitation and yet when you look at the rehabilitation that we offer to people, it is often, okay, sit in that chair and do a thousand repetitions of this very boring movement. You know what? It's so boring that our physical therapists or occupational therapists we're not even going to watch but we're just going to trust that you do it. We'll leave you to it because we can do other stuff while you're doing that.

What we've shown over and over again is that rehab doesn't work. Once you're out of the early phase of stroke where your brain is already changing because this massive insult has occurred and your brain is doing its best to heal itself. Once you're out of that initial phase, doing these repetitive things over and over again actually don't really help people all that much. What they need are to be placed in environments that restimulate their brain.

The best way to do that is to create these memorable experiences, place people with a brain injury into new and challenging environments that have diverse and novel social connections. That places your brain right back into this state of, I'm ready to learn, I'm ready to change, I'm ready to adapt. That creates recovery but that is a very inconvenient thing for many health professionals and payers and governments to hear is that this is what is needed.

Because once again, to quote Steve, what we want to do is just ignore the problem. Once we get to a certain point, we want to say recovery's not possible so this is the end for us. You can just be over here in the corner and that's not the model of care that I want to be associated with so we're very excited.

Alison Stewart: My guests are David Putrino, Director of Rehabilitation Innovation for the Mount Sinai Health System. Jenny Clarke, co-founder and CEO of SameYou as well as Clemency Burton-Hill, of course, one of our colleagues here at WNYC New York Public Radio. You are our guest as well. Our phone lines are full. We'll take a few calls, catch our breath. This is All Of It.

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You are listening to All Of It on WNYC. We are discussing traumatic brain injuries and roads to recovery. My guests are David Putrino, director of Rehabilitation Innovation from Mount Sinai Health System, Jenny Clarke, co-founder and CEO of SameYou, and Clemency Burton-Hill, our friend, who is also a trustee of SameYou. Someone tweeted in, they just wanted you to know. Tim in Brooklyn couldn't hang on the line but wanted to say so admires Clemmy for coming on the air to speak about this.

You have moved him to tears and many others, I'm sure. Let's take calls from some folks who are listening in, they can share their stories. Tevas. Tevas, calling in from Brooklyn. Hi.

Tevis: Hi. It's Tevis. You got it correct. [laughs]

Alison Stewart: Hi, Tevis.

Tevis: Thank you, guys, so much for having this conversation. I feel like it's something that as a society we just don't ever speak about. I had a concussion on a bike accident about two years ago and spent one year at NYU's concussion rehab center doing a lot of vestibular physical therapy and also other physical therapy, but I think something that is not often discussed is the link of head trauma to depression, to emotional challenges, to lack of focus, inability to hold conversations or keep a conversation. Those were all things that I definitely struggled with throughout the last two years and still do, to be honest.

Alison Stewart: Tevis, thank you so much for being candid and calling in. This actually brings me nicely to Jenny. Your organization has some peer-to-peer programs. Tell us a little bit more about those programs and their goals.

Jenny Clarke: We had received so many thousands and thousands of messages when Emilia told her story. The overriding thread was that there is such a lack of support that is for emotional recovery or as I'm now really framing it as a nonclinical person mental health recovery. Because it's very isolating, as we've already said. What we've got as a series of programs, the first thing is people do feel that it's a healing process to tell their own stories.

We have a library of stories. We have the facility for people to tell their stories. We have just started a buddy program in the UK and we're talking to David about how we might extend that to the US. We have again found that people who have gone through this experience, maybe three, four, five years ago, might be ready to share their lessons because that's what people who've just experienced it. Don't forget, it's also families as well.

It's not just the person who survived the injury, it's their carers, their loved ones. The ripples of this go right throughout society and the community. Matching people together to actually make sure people realize that they're not alone. Even though people don't talk about it enough it happens all the time. There are many ways that you can help yourself and help each other to figure out what the next steps are as you go forward.

Alison Stewart: A tweet from Larry says, we just had the sixth anniversary of my wife's stroke at age 49. I'm her full-time caregiver. She has severe difficulties with motor control and speech. Now lifelong chronic conditions. I appreciate bringing focus to this topic, especially the support of family caregivers. Larry, thank you so much. Let's talk to Peter from Millburn, New Jersey. Hi, Peter.

Peter: Hi. Thanks for having me on. I'm a TBI survivor going on about nine years ago. I was racing in the Catskills in part of the race involved with bike portion. I was doing pretty well then it was Thursday. I have no idea what happened to me. If you look at the helmet, you get a chance to [laughs] think about what it is, but there were many difficult times in that recovery process.

Many of the things the previous callers have been saying absolutely ring a bell with me. I wasn't debilitated nearly as badly as many people have been. In fact, I guess one of the things I wanted to speak about was it's often an invisible injury. Looking at me, you would have no idea I suffered a TBI, but I'm now in a gray area where I'm not the person I used to be.

I'm not as good as I used to be. In fact, I'm a retired neuroscientist, but I'm not physically and obviously hampered. Some of the things I did want to say, one was with the sensory flooding that happens when you're in the acute phase of recovery, it's difficult to talk, it's difficult to sort things out. You didn't actually teach me how to talk, but my dog helped me talk again. The baby talks you do with your dog.

Alison Stewart: Sure.

Peter: Songs you have known for years and years. You've known by heart. When I had to be alone, once my wife had to go back to work, I wound up talking with my dog and my wife discovered, "Hey, you're talking." I did want to mention that New York and New Jersey have a brain injury alliance that helps people. They're, I believe grant-funded services that help people with case management as well as support groups online.

There's one that's in New York City. I sit in on these as well as the New Jersey ones. Oh, and I also am in a town that has a place called the Opportunity Project. It is a clubhouse model rehabilitation for people who have had any different type of brain injury, whether it be a traumatic stroke, anoxia. There are some services out there, but they're few and far between. It's so hard to understand when somebody can't really communicate what they're feeling.

It's like they're chasing a ghost. Their former self. They're mourning and they don't know how to get back to it.

Alison Stewart: Peter, thank you so much for offering so many different ways that you help people who are listening in the area. Clemmy, what did you want to dive into?

Clemency Burton-Hill: I just want to say thank you. That's a beautiful way of evoking this chasing a ghost. It's so complex on so many levels all the time. In my case, singing has been almost impossible. Lots of programs use singing to retrieve words and the opposite happens to me.

I just want to say a huge shout-out to my amazing speech pathologist, Allie Manning. She was one of my first speech therapists after I left Mount Sinai. I went to Rosk in NYU as an inpatient before the pandemic hit. It wasn't long. There wasn't much opportunities to be able to do speech therapy, but Allie was the one who was so unbelievably--

She believed in me and she made me see a sense of like, you can find this in your brain somehow. She's still doing that with me right now. She's now a friend, a great friend, and a great buddy. I'm very, very lucky obviously. I'm white, I'm privileged to a point. I'm middle class.

I do have some health insurance, although not now because I'm not in that great area. The acute period. Yes. I can get some sessions of PT and OT, occupational therapy, and speech, but it doesn't go very far. I was 38 when it happened, and I had a very, very, very busy life and busy career and lucky. I had two beautiful boys and a very supportive husband and friends and family.

When I think about people who are not quite so lucky in any kind of way, I also feel like I have a platform because of my formal life. I want to use that platform to help other people who can't get onto a mic in NYC. It's just unbelievable how little support there is.

Alison Stewart: David, when Clemmy reached out to me to have this conversation, she said, your work is at the cutting edge of medical rehabilitative and therapeutic solutions for brain injury worldwide.

David Putrino: Wow. That's nice.

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Alison Stewart: What's something you're doing that is really, really innovative that people really might have to think about things differently, but that would be good?

David Putrino: At any one time, we're running about 30 different clinical trials on novel neurotechnologies. I would say probably right now, one of the most bleeding edge technologies we're working on is with a technology produced by a company called Synchron. They are a brain-computer interface company. They've developed a technology that is helping individuals who are completely locked in with a neurological injury or disease to communicate with the outside world.

They have an electrode that enters the body through the vascular system, actually. You pop it into the jugular vein, and it slowly makes its way to the motor area of your brain where your brain produces movement signals. Then once it's there, it can record brain activity and if you think about moving your hand or think about moving your leg, we can map that onto an action on a computer. We now have around three people in the US because we're doing the first in human trials here in the US, who are completely locked in with ALS, who now have cognitive control of a digital device. They're able to move a cursor around and click on things. One of the--

Alison Stewart: That's exciting.

David Putrino: It is super exciting.

Alison Stewart: I know. It's exciting.

David Putrino: One of the things that I get most excited about, and one of the things that makes me say that we have a lot of work to do is trying to define the medical necessity of a technology like that. We get told, "This is an expensive implant, why should insurance pay for this?" We say, "You've got folks who have a severe brain injury, severe spinal cord injury, ALS."

All of the muscular dystrophy who have no community because they're deemed too disabled to be worthy of community. This technology opens up everything for them. Suddenly they can control a device. They can talk to their friends in real-time. They can do things that has been denied from them. We need to make the case that this is not just frivolous. This is not just something that is nice to have. This is an absolute human right and medical need.

Alison Stewart: Jenny, as we wrap up, is there anything else you'd like people to know about your organization?

Jenny Clarke: What we try and do is just as Clemmy says, try and give a voice to people who don't have a voice. Again, Emilia has the platform. What we see is a huge gap that people who have survived a brain injury, they have very particular and very clear needs and wants. Then we have the clinical wonderful community that is dedicated to helping, but there is a very, very big gap in between.

I think the very simple thing to be able to try and change is supporting emotional and mental health recovery. That's really the thing that we're now focused on.

Alison Stewart: It's SameYou.

Jenny Clarke: sameyou.org.

Alison Stewart: There we go. My guests have been Clemency Burton-Hill, Jenny Clarke, and David Putrino, as well as our listeners. Thanks for folks who called in. Thank you all of you for coming to the studio. We really appreciate you.

David Putrino: Thank you.

Jenny Clarke: Thank you.

Clemency Burton-Hill: Thank you.

 

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