Season 2, Episode 2: Building Bridges for Brain Injury: The Legacy of Marilyn Spivack & Dr. Mel Glenn

Transcript of Season 2, Episode 2

Dr. Mel Glenn 00:00

Marilyn was the most influential person in the brain injury rehabilitation world of all time. There is no physician neuropsychologist, who was as important as Marilyn in propelling. It's true. It's absolutely true and propelling the world of brain injury rehabilitation to develop science to treat patients vigorously and aggressively, and brought people together and conferences, you know, really coordinated and helped to develop the entire world of brain injury rehabilitation, which was in its infancy when she started.

Shonali 00:51

Welcome to finding strength, the Spaulding Rehabilitation Podcast where we'll try to connect the dots between rehabilitation research and the people who are most impacted. This production is a collaboration between the model systems and the rehabilitation outcomes Center at Spaulding. I'm your host Shonali Gaudino.

Typically on this podcast, we talk about the impact of the latest rehabilitation research, but in this episode, we're going to do an important look back at the history of our approach to brain injury care through the lens of two very special guests, Marilyn Spivack and Dr. Mel Glenn. If you haven't already heard our third episode, it's an excellent complement to this one. Recovery After moderate to severe brain injury with guests Tracy McCarty, the mother of Will Emery, who lived with a brain injury. Nicole Godaire, CEO of the Brain Injury Association in Massachusetts, and Dr. Joseph Giacino, now a neuro psychologist and expert on disorders of consciousness.

Marilyn Spivack’s journey with traumatic brain injury began in 1975 when her 15-year-old daughter Debbie was in a car accident that landed her in a coma for five months. In the following years, Marilyn lost her son and her husband, and watched as her daughter Debbie was underserved and underestimated by a world that was not designed to fit her.

Marilyn Spivack 02:13

Shonali, I can't even begin to tell you what it felt like being in my world in 1975. Debbie was in this black coma for at least three months, three months, and she was at Mass General. This was March of 1975 in January of 1975, Mass General justice so the first CAT scan, CT scan, the MRIs didn't come into being till the mid to late 80s. When you talk about the science, I am telling you, there was studies there was no science.

Shonali 02:52

Over the next five years Marilyn came to understand that as she says there was no science guiding the rehabilitation of survivors of brain injury. To solve this problem, she did what she does best. She developed relationships and motivated experts to use their voices in September of 1980, fueled by her emotions and armed with an esteemed advisory board. Marilyn and her second husband, Dr. Martin Spivack incorporated the National Head Injury foundation known today as the Brain Injury Association of America, an organization that serves individuals with acquired brain injuries and their families by driving public policy advocacy efforts, funding research initiatives, educating both professionals and the public, as well as building a community for survivors with peer supports resources and a national brain injury Information Center. Dr. Martin Spivack was the founding president of the foundation, and Marilyn was president from 1981 to 1990. It would be hard to overstate Marilyn's role in all of this. For instance, the first phone number for the foundation went directly to a phone in her own kitchen.

Marilyn 04:09

My house one was 0915 And then I put in the second number 0916. It'd be listed under Spivack. Maybe I did I don't remember that. No, it was the NHIF 0916.

Shonali 04:17

And thus began a lifetime of connectivity. Marilyn and our team made phone calls, sent letters and faxes. It was the 80s after all created and circulated informational brochures. They set up meeting after meeting finding people who could help them achieve their goals, doing so with good humor and charm, winning hearts and minds and eventually money. Within two years of incorporating Congress began appropriating funds for Brain Injury Research and Training Centers as a direct result of their advocacy efforts and Marilyn persistence with policymakers.

Marilyn 04:50

The state head injury program functions under the Massachusetts Commission for rehabilitation which I'm began with back in the early mid 1980s, with Governor Dukakis, and asking him, you know, what's a good thing when you can dance with a governor? It was our second big annual professional conference. And he had just become governor. And he lost a brother to a head injury many years ago when they were both young. And he said, So Marilyn. What can we do for you? Ah, that's a great question. So, the next thing we know, I had a meeting in his office, and I said, we need a task force on head injury. He said, Why do you want a task force? I said, because we need to understand the need for services in the state. And he said, You don't need a task force. You need services now. Right? He said, Okay, well, you should have a meeting with the head of all the human service agencies. I said, That's a wonderful idea. But I don't need to have the meeting because they won't come. You need to have the meeting in this office. They will come. And I said it. And he did it. And he did it. And we had some of our key speakers address those. I spoke to the need. But they talked about the need professionally, that we needed rehab, we needed skilled nursing we needed and instantaneously, Alma bar tells who was commissioned of Mass Rehab, Rehab Commission, vocational rehabilitation, said, I'll take this on, I'll be the lead. And till this day, the Mass Rehab Commission is the coordinator, the orchestra leader.

Shonali 06:51

The thing that really struck me that I think is different about you from so many other people who have a cause, is that you used your voice, but you always made sure to pull in the experts with you.

Marilyn 07:05

Always, always. And they all became good friends and loyal supporters. And I of them.

Shonali 07:13

And I'm sure in your own right, you knew just as much about medicine, by the end of all of it, as many of them did.

Marilyn 07:20

Oh, you can call me Doctor Spivack. You know what you can call me — you can call me Commissioner Spivack. Because going back to all the governors, we have had commissions and re and we had a head injury. And when they said everybody who's on this commission is now a commissioner. So I said, Oh, okay. I think that's rather odd. But here I am a commissioner.

Shonali 07:42

Marilyn has authored book chapters, produced conferences, advised government agencies, testified at government panels and has received so many awards, including a Presidential Service Award from George H. Bush. But the thing that is so striking to anyone who has met her is her mental Rolodex. She has personally met with countless individuals and families of brain injury survivors, policymakers, advocates, elected officials, physicians, other rehabilitation and health providers. It just doesn't end. Here are some samples from our brief interview.

Marilyn 08:20

One of the very well-known researchers and neuro psychologists was a doctor by the name of Sheldon Barrel. And he called me the Gypsy mother. John White, wasn't there yet. Tessa Hart, Dan Keating, Matt Mayer and Mitch Rosenthal, Dr. Joseph Finns, Dr. Doug Garland. You can google him. Larry Marshall and Doug Katz, Manny Lipson, and Nick Alexander. No, Harvey was not involved yet.

Shonali 08:42

See what I mean? She's a networking superhero. Anyway, one of the names in Marilyn's Rolodex is Dr. Mel Glenn.

Mel 08:49

I remember we actually first met in your kitchen. This was not the earliest meetings for the development of the National Head Injury foundation. But one of the later meetings George Forensic brought me.

Marilyn 09:03

Oh, right. That's right. And George and I met frequently.

Mel 09:09

Yeah, so I just sat back and listen.

Shonali 09:11

Dr. Glenn just recently retired from his position as Chief of the Brain Injury division at Spaulding, but at the time, he had just completed school and was drawn to the challenges posed by head injury.

Mel 09:23

First of all, when I did my residency training from 1978 to 81 at NYU, there was no brain injury, rehabilitation rotation. I was in a rehabilitation residency training program that I didn't learn about brain injury rehabilitation, it wasn't even an option for me to go into that field. So, I did a spinal cord injury rehabilitation fellowship, and then got my first job at Tufts, where there really wasn't a lot of spinal cord injury rehabilitation, and my chairman Bruce Ganz was concerned thing at this nursing home called the granary that had out of that 200 Something beds that it had 160 beds that they used for patients with severe brain injuries. And it was because the payers didn't know what to do with them. So, they just would send them to the greenery. Dr. Ganz was consulting once a week for half a day. And he traveled a lot. So, he asked me to substitute for him when he was traveling. And I just loved it. To me, for one thing, because there was not a lot known about it, it was very challenging. And you felt like you were in a frontier. And I love that. I just love that, that opportunity to try different things and see what worked. Nobody knew what worked. So, we just, we tried what made sense. So eventually, I told Dr. Gates, you know, I really liked doing this, this is what I want to do. And then it became full time. And then we started having fellows. And Dr. John White, one of the great physiatrists in brain injury, rehabilitation was one of my fellows. And he joined me as an attending on the unit. And then we had residents join us. And it became an enormous rehabilitation program. And, and again, it was the opportunity to work with patients over long periods of time. That to me was so gratifying. Because even though in that era patients were staying for months inpatient Yes, rotation some years Yeah, but in the in the place, like the granary. Most patients were staying for at least six months, many of them for a year or more, mainly because there was nowhere else for them to go. There were no programs that knew what to do with these patients. And as you're saying, there still aren't unfortunately, the granary had to close because the payers stopped.

Marilyn 12:15

Paying for Scott pain.

Shonali 12:17

As they've been saying. Brain Injury Rehabilitation Science didn't really exist at that time. We've talked on this podcast about model systems before. Model Systems are five year federally funded grant programs that bring together rehabilitation care, education and research. They enroll recently injured individuals into national databases that collect information every five years for life. In 1998, Dr. Glenn joined Spalding and earned Spaulding’s first brain and dream model system grant as project director, a program that continues to this day under the directorship of Dr. Joseph Giasino. But this was just one example of Dr. Glenn's unique appreciation for the chronic effects of brain injury. for over 30 years he has also been affiliated with an organization called Neuro Restorative.

Mel 13:06

Neuro Restorative is a company that has rehabilitation programs, mostly subacute rehabilitation, mostly residential, but some outpatient programs as well. And some also supported living residences. But then they have programs in I think, 28 states now, I've been the medical director of neuro restorative and Massachusetts since 1991. And now I'm also the medical director in Rhode Island and the National Medical Director. And I have learned a tremendous amount from being involved with these patients who are mostly patients with chronic brain injury that is their injuries were most of them more than a year ago, some of them many years. And what I have observed is that what I learned in medical school and residency training is not true, that I learned that the progress that you make in rehabilitation occurs in the first six months, maybe in the first year if you're lucky. And then you don't can't expect much more after that. But I have seen among the neuro restorative patients that if you pursue a vigorous rehabilitation program, many even years after injury, people can still make progress. And some of it is that they never really completed their rehabilitation. People made the assumption that when things slowed down, that was To the end, and the payers didn't want to keep paying. So, it would stop. But in reality, not only was there more left to do, but just like, we could learn to play the piano. Now, if we really put our minds to it and practice and practice and practice, people with brain injuries can learn things that they were previously unable to do, just by getting coached and practicing and practicing and practicing. And it varies a lot. You know, there are some people who don't make much progress. But there are quite a few people who, you know, you're delightfully surprised to see make gains. I saw one patient who first spoke eight years after his injury. So, you know, it was an it that was, it was almost a miracle. But, you know, since then I've seen more of those kinds of miracles, really. So, it's really a matter of putting the effort in. And, of course, finding somebody who's willing to pay for the program. That's, that's the biggest challenge.

Marilyn 16:22

Debbie has been with Neuro Restorative for 25 years.

Shonali 16:26

I was gonna ask if so is, is that the facility that she liked the built that she's in a group home?

Marilyn 16:32

She's been with this same three women for over 25 years. Like roommates, roommates, yeah. Housemates. They’re housemates. And some of her staff have been with her that long.

Shonali 16:44

And so how is she with neuro restorative? Is neuro restorative part of the staffing of the house?

Marilyn 16:48

Yes, yes. So, we bought the house. And then we hired neuro restorative there, our tenant, okay. And I did that for one reason only. Nobody can kick Debbie out of that house. Nobody can say Debbie is too much care.

Shonali 17:07

As you've maybe heard in previous episodes, brain Injuries can often cause problems in speech and language. In Debbie's case, she has a few key catchphrases that she uses repeatedly.

Marilyn 17:18

One of her personal care attendants, they were driving somewhere? Oh, it was Dapo, actually. And he was pulled over. He was on the highway.

Mel 17:30

Tickets. No, but I can just imagine he was pulled over.

Marilyn 17:33

And instead of going because they were in the highway on the driver's side, he went around to Deputy side, the passenger side, rolled down the window. Dapo got his papers and whatever. And Debbie looked at him and said, my name is Debbie with a why. What's your name? Oh, the opposite, said, Michael. Whatever. She looked at me. So, what are you doing tonight, babe? I mean, Dapo just lost it. And the police officer looked at the van — looked at Debbie.

Mel 18:11

Did he figure it out?

Marilyn 18:22

He said something's wrong with her. Go ahead.

Mel 18:23

That is hysterical.

Marilyn 18:24

What are you doing tonight? Isn't that a funny story? So that sums me up. Yeah. So it was that kind of behavior? Yeah. It wasn't that she was fighting anybody. She didn't. She doesn't she never had a real aggressive.

Mel 18:45

Never was never.

Marilyn 18:47

Never sort of disinhibited. Yeah. She actually has. I could have said that. Yeah. That's what it says. I would be Debbie.

Shonali 18:59

Well, it's true. You know, my mother had a stroke. When I was in second grade. She had something called Moya Moya Disease, but she had she had a brain hemorrhage. And so and I was in second grade. So, growing up, I didn't really remember pre-headed like, head injury of what she was like, but she was very disinhibited. She had a lot of things that she like, especially financially, can't tell you. We just recently got a little rid of the last timeshare that she had picked up over the years. You just bought and bought stuff over and over. But then, and she was she was loud and had a lack of filter that part of it was like, yeah, it could be the brain injury, but I think she might have always been a little bit like this. But it's hard to know.

Marilyn 19:42

It's just exaggerated. It's exaggerated.

Shonali 19:45

It takes those parts of you, as does I think aging a little bit in general, I've recognized as we get older we might fit into ourselves.

Shonali 19:53

Debbie has been under Dr. Glen's care for years. One of his areas of focus was medications to treat the many effects acts of brain injury such as inappropriate behaviors. He edited a column in the journal head trauma rehabilitation called Update on pharmacology. Well, so let's talk about the column for a second. So, in 1986, you and Bruno Wroblewski Yes, wrote a paper on anticonvulsants. And then in 2005, you wrote an article 20 years of pharmacology, and the differences sort of astounding, right in that 20 years in the in the 2005. Paper, you talk about anticonvulsants stimulants and drugs that enhance cognition, antidepressant drugs for insomnia, anti-psychotics, anti-spasticity, drugs, and alternative therapies, including herbal extracts, like St. John's Wort for depression, you talk about ginseng for mood, energy, cognitive function. And so that was 2005. And since that time, I know now you've mentioned to me already, you know, the use of methylphenidate or Ritalin, right? For the use of brain injury. And you talk about Dr. Joseph GSC. Knows paper, his findings on amantadine Yep, that can promote functional recovery and people with prolonged disorders of consciousness. So there's a lot that's happened even in now the 20 years, right, we're approaching 20 years since you wrote that 20 years on pharmacology. So, who's going to write the next paper?

Mel 21:23

Probably not me. I don't know. You know, there is no pharmacology column anymore. So, I'm not sure who would take that on. Yes, there has been progress. But not nearly enough. I mean, in some ways, it has been minimal. And I think for those of us in the field, frustrating because we, pharmacology is an area that, you know, you can definitely help people, there's no question. If you find the right drugs, you can help people in a variety of different areas. And so, to find that there are some, some areas like the treatment of behavior disorders after brain injury. There have been very few studies and no, except for Flora Hammond studies of amantadine, for irritability and aggressive behavior. There have been very few studies

Shonali 22:27

As the decades rolled on, Marilyn also joined Spaulding in a novel role designed for her special skill set, Neuro Trauma Outreach Coordinator.

Marilyn 22:36

I could sit with a patient's family all day long in my office, nobody else can do that.

Shonali 22:42

No one else can do that. So, we can say, Who's the next Marilyn? And the answer to that is, there is no next Marilyn. But there's, it's it would be impossible to replace Marilyn. But that roll, even if it's by somebody who does 50% of the work that you did, should continue.

Marilyn 23:02

I will say that the Brain Injury Association of Massachusetts, we have grown enormously, and successfully. So, the point that our organization is the go-to organization for every human service agency in this commonwealth, the mass Brain Injury Association, just received a very significant grant. And that is to increase our social workers, our staff, to the point where we can send people out. So, our plan is, if accepted by Spalding that we can have somebody here to do what I have done. The difference is their learning curve too. And they're not me and then not Nicole, but the fact is, it's somebody to listen, somebody to guide them, and somebody to show them the road to resources and help them. And I think that's something that...

Shonali 24:07

And I think is maybe a better solution in the long term because it's somebody that can continue.

Marilyn 24:11

That is absolutely right.

Shonali 24:15

And so, Marilyn's legacy lives on, she's still angry, perhaps now more than ever, she wants to see change. She sees how people with severe brain injuries are not given a proper chance to live in the critical weeks and months after injury. And those who are don't get enough or sometimes any rehabilitation services to get them the best path to recovery. But Marilyn's fierce spirit of advocacy, combined with her natural charm, have left an indelible mark on the brain injury community, and we will all do our best to continue the charge.

A big thank you to Dr. Glenn, Marilyn and Debbie for sharing their stories with us. Remember that you can go to the episodes resource page For links to the programs that we've mentioned, if you've enjoyed this podcast, please know that liking, subscribing and sharing is essential to sustaining our work. We release episodes regularly so stay tuned for more stories.

The Finding Strength production is a collaboration between the Rehabilitation Outcomes Center at Spalding and our model systems, the Spaulding Harvard Traumatic Brain Injury Model System, The Boston Harvard burn Injury Model System in the Spalding New England Regional Spinal Cord Injury Model System Center, all funded by the National Institute on Disability Independent Living and Rehabilitation Research. The material presented here is for general informational purposes only.