In this special episode honoring the close of National Aphasia Awareness Month, we share a powerful personal story of stroke and aphasia. Joined by Paul and Yasmèn Guidoboni, along with speech-language pathologist Olivia Gampel and systems science expert Dr. Carla Hendricks, we explore the complex journey faced by people with aphasia, their care partners, and the clinicians who support them.
In this episode of Finding Strength, we explore thedifficult decisions families face when a loved one experiences a severe traumatic brain injury (TBI), particularly regarding life-sustaining treatment.In this episode we speak with Debra, whose daughter Marissa sustained a severe TBI in a car accident and spent months as a Spaulding patient. We also hear from Dr. Theresa Williamson, a neurosurgeon and surgical ethics researcher, and Dr. Yelena Bodien, a clinical neuroscientist specializing in disorders of consciousness. Together, they discuss the evolving science of prognosis in TBI, the impact of early decisions to withdraw life-sustaining treatment, and the need for improved patient-doctor communication in critical care settings.
Episode Guests
Yelena Bodien, PhD is an Assistant Professor at Vanderbilt University Medical Center (VUMC) in the Department of Surgery, Department of Physical Medicine and Rehabilitation, and Department of Neurological Surgery. She is an investigator in the VUMC Critical Illness, Brain Dysfunction, and Survivorship Center where she co-directs the Imaging Core. Previously she was faculty at Massachusetts General Hospital and Spaulding Rehabilitation Hospital where the work described in this podcast was conducted. Dr. Bodien studies recovery after severe brain injury, applying standardized neurobehavioral assessment and advanced neuroimaging techniques to improve diagnostic and prognostic precision. Dr. Bodien holds leadership positions in the Neurocritical Care Society Curing Coma Campaign and the American Congress for Rehabilitation Medicine.
Theresa Williamson, MD is a neurosurgeon and surgical ethics researcher who cares for people with all types of spine disorders as well as brain and spinal trauma. Her clinical expertise includes tailoring an approach to best fitthe patient and their disease including using minimally invasive techniques. Her research focus is neurosurgical decision-making and patient-doctor communication as well as health care disparities. She combines bioethics theory with empirical data science to tackle complex decision-making problems in neurosurgery. Dr. Williamson is a member of the Center for Outcomes and Patient Safety in Surgery (COMPASS) at Massachusetts General Hospital.
Deb Jones is a proud parent of a 39-year-old daughter who sustained a significant TBI. Her career as an educator spanned over 38 years and included teaching kindergarten through third grade. Over the last 12 years of teaching, Deb served as Math Specialist for Kindergarten through sixth grade in her hometown district. Following her retirement, Deb focused on her many interests of gardening, reading, walking, traveling, and enjoying her new granddaughter! Last year she received a phone call with news that no parent ever wants to hear – her beautiful, vibrant daughter had been in a car accident while traveling from NH to Virginia and was hospitalized with a serious TBI. From that moment on, Deb has focused on advocacy efforts to ensure that her daughter has access to best possible resources. She and her husband serve as caregivers for their daughter. The journey is long and ongoing, but with the results of research, support from dedicated therapists, family and friends, and continued love and prayers from all, the future is promising. The goal is for her daughter to have increased independence, enjoy a high quality of life and return to all that she loves and holds dear!
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Credits
Shonali Gaudino, OT, Host, Producer, Co-Creator
Ellyn Pier, MPH, Production Coordinator, Co-Host
Chuck Clough, Editor
Mary Slavin, PhD, Executive Producer
In this episode, we spotlight two special figures in the evolution of brain injury rehabilitation: Dr. Mel Glenn and Marilyn Spivack.
Episode Guests:
Mel Glenn, MD has been a physician specializing in Physical Medicine and Rehabilitation for over 40 years, and on staff at Spaulding Rehabilitation since 1998. He was Chief of the Brain Injury Division of the Department of PM&R from 2015-2023. He is an Associate Professor at Harvard Medical School (HMS.). From 1998 – 2008, Dr. Glenn was Project Director of the Spaulding/Partners TBI Model System at HMS, a research grant funded by the National Institute on Disability and Rehabilitation Research. He has been Medical Director of Brain Injury Services in MA for Mentor ABI/NeuroRestorative since 1991 and Medical Director of Community Rehab Care since 1996. Dr. Glenn was the editor of the Update on Pharmacology column of Journal of Head Trauma Rehabilitation from 1985 to 2013.
Marilyn Spivack is a brain injury advocate. She and her husband Dr. Martin Spivack co-founded the National Head Injury Foundation, which grew into what is known today as the Brain Injury Association of America and the Brain Injury Association of Massachusetts. They founded the organization because their daughter, Deborah Price sustained a severe head injury on March 15th, 1975, which left her severely disabled and at the time, there were no dedicated TBI extended rehabilitation or cognitive services available. Marilyn served as President of the National Head Injury Foundation for almost 10 years from 1981 – 1991, and then continued her journey as a consultant and at Spaulding Rehabilitation as a Neurotrauma Outreach Coordinator, serving professionals, patients, and families seeking assistances with resources and services. She has served as Co-Chair of the Policy & Legislation Committee of American Congress of Rehabilitation Medicine since 2006.
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In this episode we discuss findings about the kinds of head impacts that lead to neurodegenerative brain disease.
Episode Guests
Daniel Daneshvar, MD, PhD
Dr. Daneshvar conducts research on the long-term effects of moderate-severe traumatic brain injury, concussion, and repetitive head impacts, including chronic traumatic encephalopathy (CTE). Dr. Daneshvar's work has been published in the Journal of the American Medical Association, Annals of Neurology, and Brain, and has been featured broadly including in the New York Times, the Wall Street Journal, NPR, and ESPN. He also founded Team Up Against Concussions, the first scientifically validated concussion education program for kids. He is the Director of the Institute for Brain Research and Innovation at TeachAids, which created CrashCourse: a free, scientifically validated virtual reality and computer-based concussion education program. He received his S.B. from MIT and completed his M.D./Ph.D. at the BU CTE Center. His research resulted in the first dissertation in history to study CTE. He completed residency at Stanford University before joining the faculty at Harvard Medical School.
Lisa McHale
Lisa McHale graduated from Cornell University, where she met her husband, Tom McHale, an All-American Defensive End for the Big Red. They married in 1990 and moved to Tampa, where Tom began his 9-year NFL career with the Tampa Bay Buccaneers (and later the Philadelphia Eagles and Miami Dolphins) and Lisa received a Master’s and Educational Specialist (ED.S) degree in School Psychology from the University of South Florida. Their eldest son T.J. was born in May 1994. He was joined by brothers Michael in January 1998 and Matthew in December 1999. Lisa first became aware of CTE in 2008 when her husband of eighteen years passed away in May and became the second former NFL player diagnosed with Chronic Traumatic Encephalopathy (CTE) by researchers at the CTE Center at Boston University School of Medicine. In early 2010, Lisa joined the team at the Concussion Legacy Foundation (CLF), first serving as the Volunteer and Family Coordinator. She currently serves as the Director of Legacy Family Relations for both CLF and the BU CTE Center, working remotely from her home in Tampa, Florida.
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In this episode we discuss concussion education programs for school sports.
Episode Guests:
Daniel Daneshvar, MD, PhD
Dr. Daneshvar conducts research on the long-term effects of moderate-severe traumatic brain injury, concussion, and repetitive head impacts, including chronic traumatic encephalopathy (CTE). Dr. Daneshvar's work has been published in the Journal of the American Medical Association, Annals of Neurology, and Brain, and has been featured broadly including in the New York Times, the Wall Street Journal, NPR, and ESPN. He also founded Team Up Against Concussions, the first scientifically validated concussion education program for kids. He is the Director of the Institute for Brain Research and Innovation at TeachAids, which created CrashCourse: a free, scientifically validated virtual reality and computer-based concussion education program. He received his S.B. from MIT and completed his M.D./Ph.D. at the BU CTE Center. His research resulted in the first dissertation in history to study CTE. He completed residency at Stanford University before joining the faculty at Harvard Medical School.
Esther Lovett
Esther is an analyst at Guidepost Growth Equity. She joins us in this episode because of her experience as an advocate for post-concussion syndrome. As an eighth grader in 2013, she experienced her first concussion while playing soccer. Over the next few years, Esther, who was an avid athlete playing soccer, hockey, and tennis, experienced a total of five diagnosed concussions. She shares her experiences to support others with insights, suggestions, and information on various platforms including her own website, Headstrong.
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If you are interested in one of the articles highlighted on the show, but are having trouble accessing it, please reach out to us at SRNOutcomesCenter@partners.org.
Credits
Shonali Gaudino, OT, Host, Producer
Chuck Clough, Editor
This production is a collaboration between, and partially funded by, the Rehabilitation Outcomes Center at Spaulding and our Model Systems: the Boston-Harvard Burn Injury Model System (NIDILRR Award #90DPBU0008), the Spaulding-Harvard Traumatic Brain Injury Model System (NIDILRR Award #90DPTB0027-01-01), and the Spaulding New England Regional Spinal Cord Injury Model System Center (NIDILRR Award #90SIM0017-01-00).
In this episode, we hear about the state of the science of sports medicine in the elite para-athlete.
Episode Guests:
Cheri Blauwet, MD is an Associate Professor in Physical Medicine and Rehabilitation at Harvard Medical School, the Distinguished Chair in Physical Medicine and Rehabilitation at Brigham and Women’s Hospital, and the Chief Medical Officer of Spaulding Rehabilitation Hospital. She is an attending sports medicine physician at Mass General Brigham, where she also serves as Founding Director of the Kelley Adaptive Sports Research Institute. Dr. Blauwet is also a former Paralympic athlete in the sport of wheelchair racing, competing for the United States Team in three Paralympic Games (Sydney '00, Athens '04, Beijing '08) and bringing home a total of seven Paralympic medals. She is also a two-time winner of both the Boston and New York City Marathons.
Professor Wayne Derman is the Executive Head of the Department of Exercise, Sport and Lifestyle Medicine, as well as the Head of Division: Institute of Sport and Exercise Medicine (ISEM) at Stellenbosch University. He is currently a Co-director of the IOC Research Centre in South Africa and heads up one of two FIFA Medical Centres of Excellence in Africa. His research focuses on secondary prevention of chronic diseases of lifestyle, and injury and illness prevention in athletes including those with disabilities.
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If you are interested in one of the articles highlighted on the show, but are having trouble accessing it, please reach out to us at SRNOutcomesCenter@partners.org.
Credits
Shonali Gaudino, OT, Host, Producer
Chuck Clough, Editor
This production is a collaboration between, and partially funded by, the Rehabilitation Outcomes Center at Spaulding and our Model Systems: the Boston-Harvard Burn Injury Model System (NIDILRR Award #90DPBU0008), the Spaulding-Harvard Traumatic Brain Injury Model System (NIDILRR Award #90DPTB0027-01-01), and the Spaulding New England Regional Spinal Cord Injury Model System Center (NIDILRR Award #90SIM0017-01-00).
Episode Description
In this episode we discuss the benefits and barriers to fitness in people with disabilities, inspired by the article More Than Just a Game: The Public Health Impact of Sport and Physical Activity for People With Disabilities.
Episode Guests
Cheri Blauwet, MD
Cheri Blauwet is an Associate Professor in Physical Medicine and Rehabilitation at Harvard Medical School, the Distinguished Chair in Physical Medicine and Rehabilitation at Brigham and Women’s Hospital, and the Chief Medical Officer of Spaulding Rehabilitation Hospital. She is an attending sports medicine physician at Mass General Brigham, where she also serves as Founding Director of the Kelley Adaptive Sports Research Institute. Dr. Blauwet is also a former Paralympic athlete in the sport of wheelchair racing, competing for the United States Team in three Paralympic Games (Sydney '00, Athens '04, Beijing '08) and bringing home a total of seven Paralympic medals. She is also a two-time winner of both the Boston and New York City Marathons.
Saul Fisher
On June 10th, 2018, Saul Fisher was about a mile from his home halfway through his 25-mile bike workout when he was hit by a car and his life changed in an instant. He states:
Kathleen Salas, PT, MHA
Kathleen Comfort Salas is a physical therapist with extensive experience working with clients with neurologic impairments. She began blending adaptive sports with her rehabilitation approach 30 years ago. In 2009 she led the expansion of Spaulding Adaptive Sports programs from Boston to the North Shore, where she ran programs until becoming the full time Boston Coordinator of Spaulding Adaptive Sports Centers in 2021. Kathleen promotes the power of sport to enhance rehabilitation and achieve recreation goals, and empowerment for people with disabilities in all areas of their lives.
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Episode Description: In this episode, we talk about aphasia, the Spaulding-MGH Institute of Health Professions ICAP program, and the story of program participant Dana Lanzillo and his wife Jane. Stories are based on the article Outcomes of an interprofessional intensive comprehensive aphasia program’s first five years.
Episode Guests:
Esther Ayuk, MS, CCC-SLP, CBIS is an Instructor in the Department of Communication Sciences and Disorders and Coordinator and Clinical Supervisor of the Aphasia Center at the MGH Institute of Health Professions. She is a certified brain injury specialist and has worked as a speech-language pathologist at Spaulding Rehabilitation since 2017. Her clinical research is focused on the standardized assessment of language and cognition across the continuum of care and the role of this information in predicting patient outcomes and influencing health-related quality of life.
Randie Black Schaffer, MD, MA is a physiatrist specializing in Stroke Rehabilitation. She founded the first Young Adult Stroke Rehabilitation Program in the country, which has been widely copied regionally and nationally. At Spaulding she started the Young Adult Stroke Service, she directs the SRH Inpatient Stroke Program and serves as Chief of the Division of Stroke and Neurology of the Dept. of Physical Medicine and Rehabilitation of Harvard Medical School.
Lynne Brady Wagner, MA, CCC-SLP, MRMC, HEC-C serves as the Chief Learning and Diversity, Equity and Inclusion Officer, Chair of the Ethics Advisory Committee and Associate Director of the Spaulding Stroke Wellness Institute at the Spaulding Rehabilitation Network. In her 25 years at SRN, she has fulfilled many roles including speech-language pathologist, Director of the Stroke Rehabilitation Program, and Director of the Clinical Scholars Program.
Mary Hildebrand , OTD, OTR/L is an associate professor and Director of the Tabor-Connor Family Occupational Therapy Center for Learning, Participation, and Rehabilitation (OT CLiPR) at the MGH Institute of Health Professions.
Dana Lanzillo and his wife Jane were participants in the the S-IHP’s CAP program (twice!)
Marjorie Nicholas, PhD, CCC-SLP, FASHA is Chair of the Department of Communication Sciences and Disorders at the MGH Institute of Health Professions and is a professor specializing in adult neurogenic communication disorders. She founded the MGH Institute's onsite Aphasia Center, which provides diagnostic and treatment services to adults with aphasia and related communication impairments. The Aphasia Center operates on the Life Participation Approach to Aphasia (LPAA) model. Prior to joining the MGH Institute, she was a speech-language pathologist for over 15 years at the VA Boston Healthcare System. Dr. Nicholas became a Fellow of the American Speech-Language-Hearing Association (FASHA) in 2017.
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S-IHP's CAP Intensive Aphasia Program | MGH IHP
In this episode, we discuss the development and use of a tool that measures function after spinal cord injury: the Spinal Cord Injury Functional Index (SCI-FI) / Assistive Technology (AT).
Episode Guests:
David Estrada, JD, represents United Spinal Association as a peer mentor, board member, and former executive director of its Greater Boston chapter as well as a national chapter liaison. He is a program manager at the Spaulding New England Regional Spinal Cord Injury Model System and the Exercise for Persons with Disabilities Program. Living with a spinal cord injury and wheelchair user for the past 27 years, he has focused on consumer-led advocacy locally and nationally to promote high quality services for better healthcare management and access to resources for the SCI community. For nearly a decade, Dave was an Athletes with Disabilities Coordinator for the Boston Marathon and continues to promote adaptive sports participation.
Alan Jette, PT, PhD, MPH, FAPTA currently serves as Editor-in-Chief of the journal PTJ and is Professor & Dean emeritus at Boston University. His scholarship focuses on evaluation of rehabilitation outcomes, the measurement of function, and the prevention and treatment of disability. He served as Dean of Boston University’s Sargent College of Health and Rehabilitation Sciences from 1996-2004, was Professor of Health Policy & Management at the Boston University School of Public Health from 2005-2017, and Professor of Rehabilitation Sciences at the MGH Institute of Health Professions from 2012 to 2021. In 2013, Dr. Jette was elected to the National Academy of Medicine, formerly the Institute of Medicine.
Sarah Skeels, BS, MPH has a B.S. in Exercise Physiology from the University of Virginia where she focused in adaptive exercise, and a Master’s Degree in Public Health from George Washington University, where she focused on Health Promotion and Disability. Sarah is a consultant on numerous research projects that involve people with SCI, a member of the Community Advisory Board with the Spaulding New England Regional Spinal Cord Injury Center; Lecturer in the Department of Occupational Therapy at Tufts University; and Senior Teaching Associate in Behavioral and Social Sciences in the School of Public Health and Brown University. Sarah serves on numerous boards of non-profit adaptive sports organizations and is a Commissioner on the RI Governor’s Commission for People with Disabilities. Sarah is a person with an SCI as a result of a bicycle accident 33 years ago, and is an adaptive snowsports instructor, a former Paralympic-level sailor, an avid outdoorswoman and most importantly, a mom.
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In this episode, we discuss our ability to predict outcomes after moderate to severe brain injury.
Episode Guests:
Dr. Joseph T. Giacino, PhD is a neuropsychologist at Spaulding Rehabilitation and Massachusetts General Hospital in Boston Massachusetts. At Spaulding, he directs the Rehabilitation Neuropsychology Service, Disorders of Consciousness Program and Neurorehabilitation Laboratory. At Harvard Medical School, he is a professor of Physical Medicine and Rehabilitation and teaches neuroethics at the Center for Bioethics. He is adjunct professor in the Rehabilitation Sciences Doctoral Program at the MGH Institute of Health Professions. His work focuses on developing more precise assessment methods and effective treatment interventions for individuals with severe brain injury. He serves as the director of the Spaulding-Harvard Traumatic Brain Injury Model System.
Nicole Godaire is chief executive officer of the Brain Injury Association of Massachusetts (BIA-MA) and has been with BIA-MA since 2005. Nicole’s passion is advocating for the brain injury community, improving access to more programs and services for individuals with brain injury and caregivers in the Commonwealth of Massachusetts. Nicole’s relationships within the provider community have made it possible for BIA-MA to increase brain injury awareness and close gaps in services across the state.
Tracey Macarty is mother to Will Emery, who lived with a traumatic brain injury until his passing in 2018. Will was an avid car enthusiast, always tinkering with his numerous vehicles. He loved playing drums with his band Arm the Hopeless. Above all, he loved his family and friends and you never walked away without a smile on your face. He guided his mother through the most harrowing time of her life, giving her life purpose. He always made sure he told her, "I love you more." Tracey was a staunch advocate for her son and hopes to continue spreading awareness and compassion for people experiencing traumatic brain injuries.
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Join us for our special 2-part kickoff series inspired by the New England Journal of Medicine article “From Survival to Survivorship – Framing Traumatic Injury as a Chronic Condition.” In this episode, we discuss finding common language in our data.
Episode Guests
David Estrada, JD, represents United Spinal Association as a peer mentor, board member, and former executive director of its Greater Boston chapter as well as a national chapter liaison. He is a program manager at the Spaulding New England Regional Spinal Cord Injury Model System and the Exercise for Persons with Disabilities Program. Living with a spinal cord injury and wheelchair user for the past 27 years, he has focused on consumer-led advocacy locally and nationally to promote high quality services for better healthcare management and access to resources for the SCI community. For nearly a decade, Dave was an Athletes with Disabilities Coordinator for the Boston Marathon and continues to promote adaptive sports participation.
Dr. Juan Herrera-Escobar, MD, MPH, is a physician scientist from Colombia with advanced training in trauma outcomes research methodology. Dr. Herrera-Escobar serves as Research Director in Long Term Outcomes in Trauma at Brigham & Women’s Center for Surgery and Public Health. His academic interests are in studying the long-term physical, mental, and social health consequences of traumatic injuries, as well as in the implementation of trauma registries and trauma systems design. His work has led to several publications on the long-term impact of traumatic injuries and the factors associated with poor outcomes, emphasizing the role of patient and socioeconomic factors in recovery.
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Join us for our special 2-part kickoff series inspired by the New England Journal of Medicine article “From Survival to Survivorship – Framing Traumatic Injury as a Chronic Condition.” In this episode, we discuss coordinated care across the lifespan of those with traumatic injuries.
Episode Guests:
Dr. Jeffrey Schneider is the medical director of Trauma and Burn Rehabilitation at Spaulding Rehabilitation and associate professor of Physical Medicine and Rehabilitation at Harvard Medical School. He serves as project director of the Boston Harvard Burn Injury Model System, a multi-institutional center grant focused on long-term outcomes in the burn population. His interests also include utilizing large data to explore rehabilitation outcomes and he is the co-Director of the Rehabilitation Outcomes Center at Spaulding.
Diana Tenney is a burn survivor who sustained a burn injury to over 90% of her body 13 years ago. She has completed well over 1000 peer support visits and speaks locally and nationally about her experience as a burn survivor. Diana currently serves as Co-Director of Knowledge Translation for the Boston-Harvard Burn Injury Model System. She is past-President and Board member of BSONE, the Burn Survivors of New England, Co-Director of the Diana Tenney Burn Research Fund, and a member of the Spaulding Council on Disability Awareness.
Judy Heumann
2-minute introduction to the podcast.