Podcasts about stroke rehabilitation

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Best podcasts about stroke rehabilitation

Latest podcast episodes about stroke rehabilitation

The Next Byte
216. Exoskeleton + Digital Twin Aid Stroke Recovery

The Next Byte

Play Episode Listen Later Mar 25, 2025 17:25


(2:30) - Regaining mobility quickly after a strokeThis episode was brought to you by Mouser, our favorite place to get electronics parts for any project, whether it be a hobby at home or a prototype for work. Click HERE to learn more about how wearable robotics is aiding Parkisons therapy! Become a founding reader of our newsletter: http://read.thenextbyte.com/ As always, you can find these and other interesting & impactful engineering articles on Wevolver.com.

Med-Surg Moments - The AMSN Podcast
Ep. 145 - How to Care for Stroke Patients PLUS Meet the New Co-Hosts

Med-Surg Moments - The AMSN Podcast

Play Episode Listen Later Feb 11, 2025 28:00


When it comes to stroke patients, it's truly a race against the clock. Are you ready? Also, get ready to meet our two new co-hosts!  Join Eric, Sam, and Sydney as well as our two new co-hosts, Kellye' and Marcela, as they share their stories, experiences, and approaches for recognizing the symptoms and caring for stroke patients in a comprehensive and timely manner.    MEET OUR CO-HOSTS   Samantha Bayne, MSN, RN, CMSRN, NPD-BC is a nursing professional development practitioner in the inland northwest specializing in medical-surgical nursing. The first four years of her practice were spent bedside on a busy ortho/neuro unit where she found her passion for newly graduated RNs, interdisciplinary collaboration, and professional governance. Sam is an unwavering advocate for medical-surgical nursing as a specialty and enjoys helping nurses prepare for specialty certification.  Kellye' McRae, MSN-Ed, RN is a dedicated Med-Surg Staff Nurse and Unit Based Educator based in South Georgia, with 12 years of invaluable nursing experience. She is passionate about mentoring new nurses, sharing her clinical wisdom to empower the next generation of nurses. Kellye' excels in bedside teaching, blending hands-on training with compassionate patient care to ensure both nurses and patients thrive. Her commitment to education and excellence makes her a cornerstone of her healthcare team.   Marcela Salcedo, RN, BSN is a Floatpool nightshift nurse in the Chicagoland area, specializing in step-down and medical-surgical care. A member of AMSN and the Hektoen Nurses, she combines her passion for nursing with the healing power of the arts and humanities. As a mother of four, Marcela is reigniting her passion for nursing by embracing the chaos of caregiving, fostering personal growth, and building meaningful connections that inspire her work.   Eric Torres, ADN, RN, CMSRN is a California native that has always dreamed of seeing the World, and when that didn't work out, he set his sights on nursing.  Eric is beyond excited to be joining the AMSN podcast and having a chance to share his stories and experiences of being a bedside medical-surgical nurse.   Maritess M. Quinto, DNP, RN, NPD-BC, CMSRN is a clinical educator currently leading a team of educators who is passionately helping healthcare colleagues, especially newly graduate nurses. She was born and raised in the Philippines and immigrated to the United States with her family in Florida. Her family of seven (three girls and two boys with her husband who is also a Registered Nurse) loves to travel, especially to Disney World. She loves to share her experiences about parenting, travelling, and, of course, nursing!   Sydney Wall, RN, BSN, CMSRN has been a med surg nurse for 5 years. After graduating from the University of Rhode Island in 2019, Sydney commissioned into the Navy and began her nursing career working on a cardiac/telemetry unit in Bethesda, Maryland.  Currently she is stationed overseas, providing care for service members and their families.  During her free time, she enjoys martial arts and traveling. 

It Could Be Your Eyes
Can My Vision Be Restored After a Stroke?

It Could Be Your Eyes

Play Episode Listen Later Jan 30, 2025 25:41


"Stroke recovery isn't the end of your vision—it's the beginning of discovering how your brain can adapt and thrive." In this powerful and insightful episode, Jessica delves into the effects of a stroke on vision and explores how vision therapy can help stroke survivors regain confidence, independence, and joy in their daily lives.Key Highlights from the Episode:Understanding Stroke and Vision Loss: Jessica explains the two main types of strokes—ischemic and hemorrhagic—and how they can lead to vision issues.What Vision Therapy Can Do: While damaged brain cells cannot be regrown, we discuss how vision therapy leverages neuroplasticity to retrain the brain, expand the visual field, and improve processing skills.A Story of Hope and Resilience: an inspiring case study of a stroke survivor who overcame significant visual challenges to rediscover joy in his life, even though he couldn't achieve his initial goal of driving again.Jessica emphasizes the importance of assembling a strong rehab team that includes behavioral optometrists and vision therapists to address both the physical and cognitive aspects of vision loss after a stroke.If you or someone you love is navigating stroke recovery, this episode offers a message of hope and practical solutions. Reach out to 4D Vision Gym to learn more about in-office and digital programs designed to support stroke survivors.(00:00) Intro(00:39) Understanding Strokes and Their Impact on Vision(01:10) Types of Strokes: Ischemic and Hemorrhagic(02:12) Recognizing Stroke Symptoms: The FAST Test(04:10) Visual Complications Post-Stroke(07:10) Eye Movement Disorders and Visual Neglect(09:21) Stroke Rehabilitation and Brain Plasticity(10:36) The Role of Behavioral Optometrists(18:31) Patient Story: Overcoming Stroke Challenges(23:30) There is HopeRESOURCESwww.nhlbi.nih.gov/health/strokewww.OVDRA.org/Visual Disturbances due to StrokeCheck out our Digital Programs4D Built for LifeStart your FREE TRIAL today 4D Built to Read Digital ProgramConcussion RecoveryBuilt to DriveFollow us at 4D Vision Gym on Facebook and Instagram @4dvisiongymvt for the latest news and updates. DM us if you have any Vision Therapy related questions - you may hear the answer in a future episode!If you enjoyed this show, please rate, review, and subscribe on Apple Podcasts, Spotify, or wherever you get your podcasts. We really appreciate your support!Send us a screenshot of your review and receive 10% off any one of our 4D Vision Gym products or services. And if your friends or family are experiencing inexplicable challenges, refer them to this podcast and tell them, “It Could Be Your Eyes.”

NPTE Clinical Files
Stroke Rehabilitation Strategies

NPTE Clinical Files

Play Episode Listen Later Jan 8, 2025 10:47


Hamza is 3 weeks post-stroke and presents with right-sided hemiparesis. He is able to sit unsupported but struggles to stand and has difficulty walking without assistance. His Brunnstrom stage is III for the right upper extremity and II for the right lower extremity. Which of the following interventions would be most appropriate for this patient to improve his functional mobility and independence? A) Facilitate weight-bearing on the right lower extremity using assistive devices B) Move the patient's right lower extremity through PNF patterns C) Use body-weight-supported treadmill training (BWSTT) D) Initiate fine motor activities for the right hand to improve hand dexterity Join the FREE Facebook Group: www.nptegroup.com

Digital Health Talks - Changemakers Focused on Fixing Healthcare
Female Founder Spotlight - Revolutionizing Stroke Recovery: How Telehealth and Robotics are Transforming Rehabilitation

Digital Health Talks - Changemakers Focused on Fixing Healthcare

Play Episode Listen Later Nov 12, 2024 28:50


In this episode of HealthIMPACT Live Digital Health Talks, we spotlight Kristin Nuckols, OTD, MOT, OTR, a pioneering female founder in digital health. As the Co-Founder and Chief Clinical Officer of Imago Rehab, Kristin shares her journey from traditional occupational therapy to developing cutting-edge telerehabilitation solutions for stroke survivors. Learn how Imago Rehab is leveraging telehealth and soft robotic technology to achieve unprecedented outcomes in neurological rehabilitation.Five Benefit-Driven Takeaways:Discover how Imago Rehab's telehealth approach allows stroke survivors to access high-quality rehabilitation from the comfort of their homes, potentially leading to better adherence and outcomes.Learn about the integration of soft robotic wearables in stroke rehabilitation, offering patients access to advanced technology that can enhance their recovery process.Understand the factors behind Imago Rehab's claim of achieving 5X+ motor and functional gains compared to traditional in-person care, providing hope for improved recovery for stroke survivors.Gain insights into Imago Rehab's business model, which aims to make specialized rehabilitation services more accessible and affordable through existing telehealth codes and partnerships with major payers. Get a glimpse into the future of neurological and cardiovascular rehabilitation, including upcoming expansions into speech therapy, vascular, and cardiac rehab, potentially offering more comprehensive care for patients with various conditions.Kristin Nuckols, Co-Founder & Chief Clinical Officer, Imago RehabMegan Antonelli, Chief Executive Officer, HealthIMPACT

Recovery After Stroke
Resilience in Recovery: Alina Gonzales's Stroke Rehabilitation Journey

Recovery After Stroke

Play Episode Listen Later Nov 11, 2024 54:50


Alina Gonzales's stroke recovery story is one of patience, progress, and resilience, inspiring stroke survivors to keep pushing forward. The post Resilience in Recovery: Alina Gonzales's Stroke Rehabilitation Journey appeared first on Recovery After Stroke.

Speak Up
Multi-Modality Aphasia Treatment and Telepractice S6E41

Speak Up

Play Episode Listen Later Nov 11, 2024 38:02


In this week's episode, we speak with Dr John Pierce from the Centre for Research Excellence in Aphasia Rehabilitation and Recovery at La Trobe University. He discusses what multi-modal treatment is, how it can be used as an aphasia treatment, and how it is being adapted for telepractice. Resources: Aphasia Therapy Finder: https://aphasiatherapyfinder.com/therapyprofile/20 Aphasia CRE: https://www.latrobe.edu.au/research/centres/health/aphasia Information on M-MAT Tele: https://www.mmat.rehab | https://www.latrobe.edu.au/research/centres/health/aphasia/research/technology Dr John Pierce: https://johnepierce.github.io AI images: https://johnepierce.github.io/AI_images.html Pierce, J. E., Hill, A. J., Wong, D., Pitt, R., & Rose, M. L. (2024). Adapting a group-based, multimodal aphasia treatment for telehealth – co-design of M-MAT Tele. Disability and Rehabilitation: Assistive Technology, 1–8. https://doi.org/10.1080/17483107.2024.2366423 Pierce, J. E., OHalloran, R., Togher, L., Nickels, L., Copland, D., Godecke, E., … Rose, M. L. (2023). Acceptability, feasibility and preliminary efficacy of low-moderate intensity Constraint Induced Aphasia Therapy and Multi-Modality Aphasia Therapy in chronic aphasia after stroke. Topics in Stroke Rehabilitation, 31(1), 44–56. https://doi.org/10.1080/10749357.2023.2196765 Rose, M. L., Nickels, L., Copland, D., Togher, L., Godecke, E., Meinzer, M., Rai, T., Cadilhac, D. A., Kim, J., Hurley, M., Foster, A., Carragher, M., Wilcox, C., Pierce, J. E., & Steel, G. (2022). Results of the COMPARE trial of Constraint-induced or Multimodality Aphasia Therapy compared with usual care in chronic post-stroke aphasia. Journal of Neurology, Neurosurgery & Psychiatry, 93(6), 573–581. https://doi.org/10.1136/jnnp-2021-328422 Speech Pathology Australia acknowledge the Traditional Custodians of lands, seas and waters throughout Australia, and pay respect to Elders past and present. We recognise that the health and social and emotional wellbeing of Aboriginal and Torres Strait Islander peoples are grounded in continued connection to culture, country, language and community and acknowledge that sovereignty was never ceded. Free access to transcripts for podcast episodes are available via the SPA Learning Hub (https://learninghub.speechpathologyaustralia.org.au/), you will need to sign in or create an account. For more information, please see our Bio or for further enquiries email speakuppodcast@speechpathologyaustralia.org.au Disclaimer: © (2024) The Speech Pathology Association of Australia Limited. All rights reserved. Important Notice, Please read: The views expressed in this presentation and reproduced in these materials are not necessarily the views of, or endorsed by, The Speech Pathology Association of Australia Limited (“the Association”). The Association makes no warranty or representation in relation to the content, currency or accuracy of any of the materials comprised in this recording. The Association expressly disclaims any and all liability (including liability for negligence) in respect of use of these materials and the information contained within them. The Association recommends you seek independent professional advice prior to making any decision involving matters outlined in this recording including in any of the materials referred to or otherwise incorporated into this recording. Except as otherwise stated, copyright and all other intellectual property rights comprised in the presentation and these materials, remain the exclusive property of the Association. Except with the Association's prior written approval you must not, in whole or part, reproduce, modify, adapt, distribute, publish or electronically communicate (including by online means) this recording or any of these materials.

The Best of Weekend Breakfast
World Stroke Day: Stroke Rehabilitation.

The Best of Weekend Breakfast

Play Episode Listen Later Oct 26, 2024 18:15


Resident GP & CEO of Proactive Health Solutions, Dr Fundile Nyati on Stroke Rehabilitation this World Stroke Day, which is observed annually on October 29, is a global awareness day aimed at increasing understanding of stroke, its prevention, and the need for improved care and support for stroke survivors.See omnystudio.com/listener for privacy information.

Ask Doctor Dawn
Nobel Prize-Winning Micro RNA to Python Hearts: Scientific Breakthroughs and Alternative Treatments for Autoimmune Diseases

Ask Doctor Dawn

Play Episode Listen Later Oct 18, 2024 32:44


Broadcast from KSQD, Santa Cruz on 10-17-2024: Dr. Dawn addresses a listener's question about optimal timing for the consumption of iron, green tea, and nori powder to maximize absorption, recommending timing and supplementation strategies. She responds to a listener's email on the issue of plastic in tea bags and provides resources for finding plastic-free options, while also clarifying misconceptions about microplastics in seaweed and fish. Dr. Dawn celebrates the Nobel Prize in Physiology and Medicine awarded for the discovery of micro RNA, explaining its significance in gene regulation and potential therapeutic applications. She highlights a major neuroscience milestone: the mapping of a fruit fly's brain connectome, discussing its implications for understanding complex behaviors and neural circuits. Dr. Dawn provides comprehensive advice for managing ulcerative colitis, including vitamin D supplementation, CBD, omega-3 fatty acids, and stress reduction techniques. She discusses a study on pythons that could lead to new therapies for heart disease, explaining how the snake's unique cardiac adaptations might inform human treatments. Dr. Dawn introduces the Ronnie Gardner method, a music-based movement therapy showing promise in rehabilitation for stroke and Parkinson's disease patients.

Inside Medical Nutrition
Working with Stroke Rehabilitation

Inside Medical Nutrition

Play Episode Listen Later Aug 29, 2024 36:34


In this podcast recorded in 2023, we were joined by our guest Smruthi Venkat, a Stroke Speech & Language Therapist, who discusses her expertise and learnings from working within stroke rehabilitation.INFORMATION FOR HEALTHCARE PROFESSIONAL USE ONLY

Speak Up
Rebroadcast: Enabling counselling practice in aphasia S6E29

Speak Up

Play Episode Listen Later Aug 21, 2024 57:24


This week, we rebroadcast an episode from Season 4. Maire MacCana, community-based Speech Pathologist with the Tasmanian Health Service, chats with Dr Jasvinder Sekhon, a speech pathologist and research affiliate and community of practice member at the Centre for Research Excellence in Aphasia Recovery and Rehabilitation. Jas explores research into counselling training for speech pathologist to support the psychological wellbeing of people with post-stroke aphasia. Contact Dr. Sekhon at: J.Sekhon@latrobe.edu.au Resources: CLEAR - Counselling education in aphasia rehabilitation short course: https://shortcourses.latrobe.edu.au/counselling-education-in-aphasia-rehabilitation-clear Aphasia CRE webinar - Enabling speech pathologists to feel confident supporting people with post-stroke aphasia: https://www.youtube.com/watch?v=aNAezKIgk5s Speak Up: Applying a biopsychosocial framework when working with people living with aphasia: S4E10: https://soundcloud.com/speechpathologyaustralia/applying-a-biopsychosocial-framework-when-working-with-people-living-with-aphasia-s04-ep10 References: The Government Office for Science, London. (2008). Foresight mental capital and wellbeing project, final project report. https://www.gov.uk/government/publications/mental-capital-and-wellbeing-making-the-most-of-ourselves-in-the-21st-century Ryff, C. D. (1995). "Psychological Well-Being in Adult Life." Current Directions in Psychological Science 4(4): 99-104. https://shortcourses.latrobe.edu.au/counselling-education-in-aphasia-rehabilitation-clear Sekhon, Jasvinder K., Oates, Jennifer, Kneebone, Ian, & Rose, Miranda (2022) A phase II randomised controlled trial evaluating the feasibility and preliminary efficacy of an education program on speech-language pathologist' self-efficacy, and self-rated competency for counselling to support psychological wellbeing in people with post-stroke aphasia, Topics in Stroke Rehabilitation. https://doi.10.1080/10749357.2022.2145736 World Health Organisation (WHO). (2001). International classification of functioning, disability and health. http://www.who.int/classifications/icf/en/ World Health Organisation (WHO). (2022). Mental health: Strengthening our response. https://www.who.int/news-room/fact-sheets/detail/mental-health-strengthening-our-response. Zanella, C., Laures-Gore, J., Dotson, V. M., & Belagaje, S. R. (2022). Incidence of post-stroke depression symptoms and potential risk factors in adults with aphasia in a comprehensive stroke center. Topics in Stroke Rehabilitation, ahead-of-print, 1–11. https://doi.org/10.1080/10749357.2022.2070363 Speech Pathology Australia acknowledge the Traditional Custodians of lands, seas and waters throughout Australia, and pay respect to Elders past and present. We recognise that the health and social and emotional wellbeing of Aboriginal and Torres Strait Islander peoples are grounded in continued connection to culture, country, language and community and acknowledge that sovereignty was never ceded. Free access to audio transcripts for all Speak Up Podcast episodes are available via the Association's Learning Hub, you will need to sign in or create an account. 1. Go to: www.speechpathologyaustralia.org.au/Public/…e616542. 2. Filter – Format – Podcast – Search 3. Select the podcast of your choice 4. Enroll (you will need to sign in or create an account) 5. Add to cart – Proceed to checkout – Submit 6. You will receive an email Order Confirmation with a link back to the Learning Hub 7. The Podcast and transcript will be available in your Learning Centre For further enquiries, please email learninghub@speechpathologyaustralia.org.au

Chiropractic Questions
Unlocking Recovery: The Role of Chiropractic Care in Post-Stroke Rehabilitation

Chiropractic Questions

Play Episode Listen Later Mar 19, 2024 10:36 Transcription Available


This week we were asked about care following a stroke and how chiropractic care can help.  Many people have benefited from chiropractic care after a stroke. There are several things your chiropractor might do different though #healthy815 #icachiropractor #palmerproudwww.rockforddc.com

Chiropractic Questions
Unlocking Recovery: The Role of Chiropractic Care in Post-Stroke Rehabilitation

Chiropractic Questions

Play Episode Listen Later Mar 19, 2024 10:36 Transcription Available


This week we were asked about care following a stroke and how chiropractic care can help.  Many people have benefited from chiropractic care after a stroke. There are several things your chiropractor might do different though #healthy815 #icachiropractor #palmerproudwww.rockforddc.com

NeuroNoodle Neurofeedback and Neuropsychology
Next-Gen Neurotech with Dr. Christoph Guger: g.tec's Breakthroughs in Brain-Computer Interfaces

NeuroNoodle Neurofeedback and Neuropsychology

Play Episode Listen Later Nov 16, 2023 39:26


#BrainComputerInterface #Neuroscience #StrokeRehabilitation #MentalHealthInnovation #gtec #Neurofeedback #DrChristophGuger #JayGunkelman #DrMariSwingle #EEG #Neurotherapy #BrainHealth #NeuroscienceResearch #Biofeedback #MentalWellness #NeurofeedbackTraining #BrainScience #NeurotechInnovation #DigitalHealth #CognitiveScience #NeurologicalRehabilitation #BrainwaveAnalysis Join us in a riveting episode of the NeuroNoodle Neurofeedback Network, featuring Dr. Christoph Guger, co-founder of g.tec medical engineering GmbH. Discover the pioneering world of brain-computer interfaces (BCI) and their transformative impact on neuroscience and neurorehabilitation.

Neurocareers: How to be successful in STEM?
From PhD Research to Entrepreneurial Venture: BCI for Stroke Rehab with Sam Darvishi, PhD at RehabSwift

Neurocareers: How to be successful in STEM?

Play Episode Listen Later Nov 5, 2023 100:39


Are you an engineering student contemplating the value of pursuing a PhD? Wondering how your research could lead to meaningful entrepreneurial ventures? Tune in to our valuable conversation with Sam Darvishi, PhD, a visionary entrepreneur who used his PhD thesis in motor imagery-based Brain-Computer Interfaces (BCIs) as a stepping stone to create a profound impact on thousands of people worldwide suffering from the consequences of stroke. In this episode of 'Neurocareers: Doing the Impossible!', we explore the fascinating journey of Sam Darvishi, the Founder and CEO of RehabSwift, a pioneering medical device company that's revolutionizing neuro-rehabilitation. Imagine a future where neuro-rehabilitation isn't a one-size-fits-all approach but a highly personalized journey. This is the reality of groundbreaking neurotech innovations in healthcare, and RehabSwift is at the forefront. RehabSwift's advanced neuro-rehabilitation interface is clinically proven to enhance hand and arm mobility, dexterity, strength, and sensation in stroke survivors. But what truly sets it apart is its ability to tailor rehabilitation to each individual's unique timing pattern. This means harnessing the incredible power of the mind to significantly boost rehabilitation outcomes. It's not just a game-changer; it's a life-changer. Join us as we delve into Sam's remarkable journey, from his academic roots to becoming a trailblazer in personalized neuro-rehabilitation. Discover how he leveraged his PhD research to establish RehabSwift, offering individualized BCI-driven upper limb rehabilitation after stroke. We'll also discuss the skills and qualities essential for aspiring professionals in the neurotech industry. Get ready to be inspired and informed! Tune in to 'Neurocareers: Doing the Impossible!' and learn how individuals like Sam Darvishi are reshaping the future of healthcare and neuroscience while making a profound impact on the world. About the Podcast Guest: Dr. Sam Darvishi is a dynamic force at the intersection of neuroscience, engineering, and entrepreneurship. As the Founder and CEO of RehabSwift, he's on a mission to redefine neuro-rehabilitation through cutting-edge brain-computer interfaces (BCIs) designed to fast-track hand movement recovery for stroke patients. Dr. Darvishi's academic journey includes a Doctor of Philosophy in Neural Engineering from the University of Adelaide and a Master of Engineering in Automation and Manufacturing from the University of Sydney, where he achieved a degree with Merit and conducted groundbreaking research in motor imagery pattern classification. At RehabSwift, Sam combines advanced technology with evidence-based neuroscience principles, crafting highly personalized and effective rehabilitation solutions. His pioneering work is poised to transform the lives of stroke survivors globally. By breaking barriers in stroke recovery, he empowers individuals to regain independence, leaving an indelible mark on countless lives. Sam aims to position RehabSwift as a global leader in neuro-rehabilitation, making a lasting impact on the field and the lives it touches. Connect with Dr. Darvishi to explore his innovative work and the transformative potential of RehabSwift's groundbreaking solutions: Via e-mail: sam@rehabswift.com Via LinkedIn: https://www.linkedin.com/in/sam-darvishi/ Learn about RehabSwift here: https://rehabswift.com.au/ About the Podcast Host: The Neurocareers podcast is brought to you by The Institute of Neuroapproaches (https://www.neuroapproaches.org/) and its founder, Milena Korostenskaja, Ph.D. (Dr. K), a neuroscience educator, research consultant, and career coach for students and recent graduates in neuroscience and neurotechnologies. As a professional coach with a background in the field, Dr. K understands the unique challenges and opportunities facing students in this field and can provide personalized coaching and support to help you succeed. Here's what you'll get with one-on-one coaching sessions from Dr. K: Identification and pursuit of career goals Guidance on job search strategies, resume and cover letter development, and interview preparation Access to a network of professionals in the field of neuroscience and neurotechnologies Ongoing support and guidance to help you stay on track and achieve your goals You can always schedule a free neurocareer consultation/coaching session with Dr. K at https://neuroapproaches.as.me/free-neurocareer-consultation Subscribe to our Nerocareers Newsletter to stay on top of all our cool neurocareers news at updates https://www.neuroapproaches.org/neurocareers-news  

BFM :: Health & Living
Doctor in the House: Being Prepared For Stroke Rehabilitation

BFM :: Health & Living

Play Episode Listen Later Nov 3, 2023 39:43


A stroke is a severe and sudden medical condition that can have profound consequences for survivors and families. Rapid treatment, as well as proper stroke rehabilitation can help one recover from a stroke, and regain independence and quality of life. Knowing what to expect in stroke rehab, and empowering caregivers to seek support, is key to successful rehabilitation and recovery. We look at these issues with consultant rehabilitation physician, Dr Intan Sabrina, to commemorate World Stroke Day on 29 October.Image Credit: Shutterstock

Sunday Night Health Show
How long does it take to recover from a stroke?

Sunday Night Health Show

Play Episode Listen Later Oct 30, 2023 54:26


We are talking about post stroke recovery, parental alienation, the risks of common over the counter medications, Tylenol and Advil and the space in between two times of life Guests: Dr. Sean Dukelow - Professor in the Department of Clinical Neuroscience at the University of Calgary and the Medical Director of Stroke Rehabilitation for the Calgary Stroke Program Natalie A. Forchuk - Founder and advocate; Parental Alienation Support Canada

NICE Talks
Updated guidance on stroke rehabilitation

NICE Talks

Play Episode Listen Later Oct 29, 2023 13:22


It is estimated that there are around 85,000 strokes every year in England, with over 1 million people currently living with its long-term effects. We catch up with Jon Brown, chair of the independent committee and Professor Stephen Hill, lay member on the committee about NICE's updated guidance on stroke rehabilitation.

Faces of TBI
The Importance of Physical Therapy with Tricia Desrocher

Faces of TBI

Play Episode Listen Later Aug 23, 2023 33:00


Tricia Desrocher joined Northeast Rehabilitation Hospital Network in New Hampshire more than 35 years ago. A Physical Therapist by Training, Tricia also has a Master of Science in Healthcare Administration and specialty certification in Stroke Rehabilitation. She has dedicated her career to the organization, its patients and to advancing brain injury care. This included providing patient care and staff mentorship at all four of the Network's acute inpatient rehabilitation hospitals, serving as the Director of Program Development for the Brain Injury program and overseeing The Joint Commission Disease-Specific Care Certification in Brain Injury. All four hospitals initially achieved this certification in 2013 and have achieved recertification at every review since then. Today, she is the Vice President of Business Development and Strategic Planning for the Network, which also includes 20+ outpatient clinics and a Home Care division. She continues to sit on the Board of the Brain Injury Association of NH and is also a member of the Advisory Council for the Brain Injury Association of Maine. In her free time, Tricia also volunteers in her hometown community and enjoys time with her family.  https://www.northeastrehab.com Episode brought to you by: Integrated Brain Centers Please consider supporting this podcast for $5 a month with a Patreon membership

Innovation4Alpha
Torque3: Advancing Stroke Rehabilitation w/ VR

Innovation4Alpha

Play Episode Listen Later Aug 23, 2023 25:12


Torque3 is developing a neurorehabilitation solution that has shown in early testing to result in significantly better recovery outcomes.  A wealth of research over the last 30 years has strongly indicated that stroke recovery can be significantly improved through immersive stimulation and robotic assistance. The Torque3 system leverages this research with an approach of uncompromising design and implementation combining a robotic chair and virtual reality.In this episode, Founder/CEO David Ellzey shares some of the science behind Torque3 and insights into where they are headed.

Neurocareers: How to be successful in STEM?
TMS and Beyond: A Journey into Multimodal BCI with Colin Simon

Neurocareers: How to be successful in STEM?

Play Episode Listen Later Jul 22, 2023 71:18


Ever wondered how we can optimize Brain-Computer Interfaces using muscle responses and Transcranial Magnetic Stimulation of the brain? Join us on the latest episode of the BCI Award Neurocareers podcast series, where we unravel the mysteries of this groundbreaking project: "A multimodal Brain-Computer Interface approach using muscle responses to Transcranial Magnetic Stimulation of the brain." In this electrifying episode, we're thrilled to welcome Colin Simon, a trailblazing researcher from Trinity College Institute of Neuroscience. Colin and his team submitted their awe-inspiring project for the BCI Award 2022 and were among the top 12 finalists. But that's not all! Colin will also take us on an exhilarating ride through his own career journey, offering invaluable insights and tips for aspiring neurotechnologists. From working with EEG and Virtual Reality to his groundbreaking clinical trial involving Transcranial Magnetic Stimulation (TMS) neurofeedback with stroke patients, Colin's expertise spans a diverse range of cutting-edge techniques and technologies. And it gets even better! Colin shares with you his strategies of making a successful BCI Award submission! Join us for an inspiring conversation as we explore the future of brain-computer interfaces, delve into the world of body ownership, and unlock the limitless possibilities of neuroscience and neurotechnology. Don't miss this opportunity to learn from one of the brightest minds in the field! Tune in and get ready to be amazed by the wonders of the human brain with Colin Simon! This episode is part of a partnership between Milena Korostenskaja, PhD at the Institute of Neuroapproaches, and Christoph Guger, PhD at g.tec biomedical engineering. We showcase the innovative projects of BCI Award winners and nominees and to guide future applicants. About the podcast guest: Colin Simon is a passionate researcher at Trinity College, Dublin. He holds a Bachelor's degree in psychology from the University of Zurich (2018) and a Master's degree in psychology with a focus on Heartbeat Evoked Potential (2019). Colin's current PhD research involves a clinical trial using Transcranial Magnetic Stimulation neurofeedback with stroke patients. He aims to improve stroke rehabilitation using innovative brain-computer interface techniques like TMS, EEG, and fMRI. Join Colin in his mission to enhance survivors' quality of life and reduce healthcare costs. Translational Brain Health Lab: https://translationalbrainhealth.com/ Email Colin: csimon@tcd.ie Email Lab: tcdtbhlab@tcd.ie Twitter: @ColinisSimon LinkedIn: https://www.linkedin.com/in/colin-simon-a504b5a1 About the podcast host: The Neurocareers podcast is brought to you by The Institute of Neuroapproaches (https://www.neuroapproaches.org/) and its founder, Milena Korostenskaja, Ph.D. (Dr. K), a neuroscience educator, research consultant, and career coach for students and recent graduates in neuroscience and neurotechnologies. As a professional coach with a background in the field, Dr. K understands the unique challenges and opportunities facing students in this field and can provide personalized coaching and support to help you succeed. Here's what you'll get with one-on-one coaching sessions from Dr. K: Identification and pursuit of career goals Guidance on job search strategies, resume and cover letter development, and interview preparation Access to a network of professionals in the field of neuroscience and neurotechnologies Ongoing support and guidance to help you stay on track and achieve your goals You can always schedule a free neurocareer consultation/coaching session with Dr. K at https://neuroapproaches.as.me/free-neurocareer-consultation Subscribe to our Nerocareers Newsletter to stay on top of all our cool neurocareers news at updates https://www.neuroapproaches.org/neurocareers-news

Know Stroke Podcast
Enhancing Stroke Rehabilitation & Recovery: Interview with Professor Julie Bernhardt

Know Stroke Podcast

Play Episode Listen Later May 18, 2023 63:23


In Episode 53 we were joined by Professor Julie Bernhardt, co-leader of The Florey's Stroke theme and leads the AVERT Early Intervention Research Program. Julie believes that to impact the global burden of disability after stroke, we need to rethink, reframe and refocus our efforts to develop more effective treatments and treatment environments (hospitals) to help people recover well after a stroke. Julie is the Director of Australia's first NHMRC Centre of Research Excellence in Stroke Rehabilitation and Recovery, a partnership that has helped build capacity and research excellence in this exciting field. She spearheads the International Stroke Recovery and Rehabilitation Roundtable task force that is identifying important knowledge gaps and setting new targets for recovery research. She also works with architects and designers to innovate rehabilitation hospital design. Episode highlights: Julie's personal experience leading to a career in PT & stroke research A Very Early Rehabilitation Trail after stroke (AVERT) How the Florey is supporting the unique needs of young stroke survivors in Australia Breaking down silos with the International Stroke Recovery & Rehab Alliance Learn more about The Florey: https://florey.edu.au/ Connect with Julie on Twitter: @AVERTtrial Show Credits: Music intro credit to Jake Dansereau, connect at JAKEEZo on Soundcloud @user-257386777. Our intro welcome is the voice of Caroline Goggin, a stroke survivor and our first podcast guest! Please listen to her inspiring story on Episode 2 of the podcast. Until next time, be sure to give the show a like and share, +follow and connect with us on social or contact us to support us as a show sponsor or become a guest on the Know Stroke Podcast. Visit our new website to apply here: https://www.knowstrokepod.com/ Connect with Us and Share our Show on Social: Website | Linkedin | Twitter | YouTube | Facebook

Neurocareers: How to be successful in STEM?
The KITE-BCI Project: Revolutionizing Neurorehabilitation with Lazar Jovanovic, PhD

Neurocareers: How to be successful in STEM?

Play Episode Listen Later May 7, 2023 88:07


Have you ever wondered how brain-computer interfaces (BCIs) can aid patients who have experienced a stroke? In this exciting episode of the BCI Award Neurocareers podcast series, Dr. Milena Korostenskaja sits down with Dr. Lazar Jovanovic to discuss his innovative work in developing the KITE-BCI system for functional electrical stimulation therapy, which has the potential to significantly improve the rehabilitation of patients who have experienced a stroke. Dr. Jovanovic, a passionate scientist and entrepreneur with expertise in human-machine interfacing and wearable technology, recently completed his Ph.D. at the Institute of Biomedical Engineering at the University of Toronto. His research project, "KITE-BCI: Brain-computer interface system for functional electrical stimulation therapy," has earned him numerous accolades, including the Annual International BCI Award 2021 nomination. In this episode, Dr. Jovanovic shares his career journey, insights into the BCI Award submission process, and valuable advice on career development in neurotech. Join us as we learn how BCIs can transform patients' lives after a stroke. Tune in to this episode of the Neurocareers podcast, brought to you in partnership with Dr. Christoph Guger at g.tec medical engineering GmbH and Milena Korostenskaja, PhD at The Institute of Neuroapproaches. Tune in now! About the Podcast Guest: Meet Lazar Jovanovic, the brainiac researcher and co-founder of Summations, a platform that brings academic articles to life! He's currently a postdoctoral fellow at Simon Fraser University and is on a mission to revolutionize running and running biomechanics with wearable technology. Lazar's Ph.D. in biomedical engineering from the University of Toronto led him to conduct groundbreaking research on brain-computer interface technology with functional electrical stimulation therapy (FEST) for arm and hand movement recovery after stroke and spinal cord injury. His project, KITE-BCI system, which integrates FEST, was nominated for the 2021 BCI Award - talk about being a genius! Follow Lazar's journey on his website and social media pages below, and join him in his quest to change the world for the better. Website: https://www.lazarjov.com/ Twitter: https://twitter.com/lazarjov LinkedIn: https://www.linkedin.com/in/lazarjov/ About the Podcast Host: The Neurocareers podcast is brought to you by The Institute of Neuroapproaches (https://www.neuroapproaches.org/) and its founder, Milena Korostenskaja, Ph.D. (Dr. K), a neuroscience educator, research consultant, and career coach for students and recent graduates in neuroscience and neurotechnologies. As a professional coach with a background in the field, Dr. K understands the unique challenges and opportunities facing students in this field and can provide personalized coaching and support to help you succeed. Here's what you'll get with one-on-one coaching sessions from Dr. K: Identification and pursuit of career goals Guidance on job search strategies, resume and cover letter development, and interview preparation Access to a network of professionals in the field of neuroscience and neurotechnologies Ongoing support and guidance to help you stay on track and achieve your goals You can always schedule a free neurocareer consultation/coaching session with Dr. K at https://neuroapproaches.as.me/free-neurocareer-consultation Subscribe to our Nerocareers Newsletter to stay on top of all our cool neurocareers news at updates https://www.neuroapproaches.org/neurocareers-news

Aphasia Access Conversations
Episode #102: Researching Health Disparities in Minority Stroke Survivors with Aphasia with Davetrina Seles-Gadson

Aphasia Access Conversations

Play Episode Listen Later Mar 28, 2023 45:22


Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Ellen Bernstein-Ellis, Program Specialist and Director Emeritus for the Aphasia Treatment Program at Cal State East Bay and a member of the Aphasia Access Podcast Working Group. AA strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Davetrina Seles Gadson. We'll discuss her work involving how brain lesion characteristics may intersect with aphasia recovery, race, and psychosocial factors, as well as issues involving health-related quality of life assessments. Dr. Davetrina Seles Gadson is the first Black-American to graduate with a Ph.D. in Communication Sciences and Disorders from the University of Georgia. She is a neuroscientist and certified speech-language pathologist with expertise in adult neurological rehabilitation and patient-centered outcomes. She currently is Research Faculty, in the Department of Rehabilitation Medicine, at Georgetown University. Dr. Gadson's research focuses on the influence of health disparities in minority stroke survivors with aphasia and the effect of such disparities on brain functioning, aphasia severity, and health-related quality of life. Most rewardingly Dr. Gadson is the co-host of “Brain Friends”, a podcast for neuro nerds and stroke survivors to talk about aphasia advocacy, language recovery, and community. Listener Take-aways In today's episode you will: Learn how health disparities may influence aphasia outcomes and why more research is needed   Discover why "Brain Friends" is another podcast you'll want to add to your playlist.   Gain practical tips on how to build confidence in intercultural interactions with your clients   Hear how health-related quality of life (HRQL) measures can help  inform your clinical practice   We'd like to recognize Kasey Trebilcock & Amanda Zalucki, students in the Strong Story Lab at CMU, for their assistance with this transcript. Show notes edited for conciseness Ellen Bernstein-Ellis (EBE) EBE: I am so excited to have a fellow podcaster here today. Thank you for being here. And I just listened to the January Brain Friend's episode. It was great. So I hope our listeners will check it out too. I want to also give a shout out to your consumer stakeholder and co-podcaster, Angie Cauthorn, because she was a featured guest on episode 70, in June of 2021, as we recognized Aphasia Awareness Month, and you just spoke with her about aphasia types and aphasia conferences, and you gave a big shout out to CAC and you gave clinical aphasiology conference and you also gave a big shout out to the Aphasia Access Leadership Summit. So really important conferences, I think that stimulate a lot of discussion and values around patient centered care. And your Brain Friends podcast just has a great backstory. So why don't we just share about how that all started? Where's the backstory to that, Davetrina? DAVETRINA SELES GADSON: Thank you so much for having me. This is such an exciting opportunity. So, Brain Friends started with myself and Angie. We were on the National Aphasia Association's Black Aphasia group call and I just loved her energy. She reached out to me after we finished that group call, and we just started talking. Our conversations were so informative, and it just lit this passion and excitement in me. I said, “Hey, can I record some of these, and maybe we do like a podcast?”, and she was totally down for it. It's just been such an innovative and fun way to disseminate science and engage many stakeholders. EBE: I want to thank Darlene Williamson, who's president of the National Aphasia Association for sending me a little more information. You told me about this group, and so I wanted to find out more. She provided this description by Michael Obel-Omia and his wife Carolyn, and I hope I said his name correctly, who provide leadership to this group. And they said that in this group, the Black American Aphasia Conversation group, “provides a place for Black people with aphasia to share their stories, provide support, meditation, and brainstorm ways to advocate and consider policies. We will discuss the unique challenges and gifts we share due to our experiences with disability and race.” I found out that you can reach out to the National Aphasia Association (NAA) for more information and to get on the email list for a meeting notifications. And in fact, I put the registration link in our show notes today. So, sounds like that group has been a meaningful discussion forum for you, too. SELES GADSON: It's been so fun. I share how for me, I've been in the field practicing for a little over 16 years now, and this was my first time being in a room with so many people that look like me. And for many of the survivors on the call, I was one of their first Black SLPs that they had ever met. Just even having that connection, and being able to speak to some of the challenges, and some of the things culturally that we both share has been my outlet, biweekly. EBE: I'm going to make sure we have that link in our show notes. Also, the link to your podcast because I encourage people to listen to Brain Friends, I've really enjoyed it.  When you and I were planning for this episode today, you talked about how being part of the National Aphasia Association's Black American Aphasia Group really helped to energize you and the research you were doing, and what a nice integration of life that was. I will want to tell our listeners about one more wonderful thing, and that's the interview you were part of on the ASHA Voices podcast as well as the related article in the ASHA leader, where I learned more about your journey to doing this research. So, as you provided clinical services for a Black client as an outpatient clinician, and this is pre- doctoral research, you recognized that there was a significant gap in the literature around working with African Americans with aphasia. You saw the need to understand the impact of aphasia on identity and motivation in order to best help this particular client. And those are both really important concepts within the Life-Participation Approach to Aphasia (LPAA) framework as well. So, then you shared that you got some important advice from an important mentor. Do you want to share what happened next? SELES GADSON: Definitely. So, one thing that's also unique about that time is that at that point in my career, I had worked in many of the clinical settings. I had done acute care, inpatient rehabilitation, skilled nursing facility, and even worked as a travel SLP traveling throughout the United States. And so, once I had got to that outpatient setting, it was different from any of the other settings because these individuals were home. And often times, they wanted to get back to work. I remember feeling a little discouraged because I wasn't finding research on a lot of functional treatment approaches or functional therapy. In addition, I wasn't finding research on black stroke survivors with aphasia. And so, I mentioned to one of my mentors at the time, Dr. Paul Rao. I said, “what's going on in the field? And I'm not seeing this, and I have this client, and I don't really know what to do.” And he said to me, “Stop complaining kiddo, and go back and get your PhD.” Admittedly, when he said it, it was kind of like, “okay fine, I'll go do it.” I don't think I realized all what it would take. That's what really made me pursue the degree was this notion that I could help facilitate some of that change and bring some of the research that I needed to see. EBE: That is so important. And that story really made me reflect on another story that has really impacted me from a dear colleague, because you experienced in your doctoral work some concerns about doing research on Black Americans because your interest was seen, as it said in I think the ASHA Voices interview or in the Leader, as “personally motivated.” Your story mirrors one that a colleague and dear friend, Nidhi Mahindra, told me as well. During her doctoral research, she was told that while pursuing multicultural interests were worthy, that she may face barriers to getting funding to pursue that line of work. That might be problematic, right? She had to struggle with that. Despite that daunting message, she persisted, and then was funded by ASHA on a grant studying barriers influencing minority clients' access to speech pathology and audiology. Nidhi reminded me how our life experiences can often inform our work in important and valuable ways. Davetrina, you've channeled your experiences into these explicit observations and data that you shared with your doctoral committee. That was a really important part of moving forward.  Do you want to share some of the points  gathered for that doctoral committee to help support why this research is so important? SELES GADSON: First, I want to thank Nidhi. Hopefully I'm pronouncing her name right, for her perseverance, because it was some of her work that helped me in my dissertation. Being able to cite her just really shows the importance that everybody plays in breaking barriers and pursuing the things that really speak to them. And one of the things that I'll clarify, it was two parts in pleading this case. The first part was that I changed the committee. I think that that was a supportive thing. And then, the second part was that when I prepared all of the research on why I needed to do this work. Some of the research looked at what we knew already with stroke recovery in minoritized groups, which was that Black African Americans were twice as likely to have a recurrent stroke than any other ethnic group and what we were seeing in the aphasia literature for Black Americans, which was the narrative of Black Americans having longer hospital stays, more hospital costs, but poor functional outcomes. And so, it was these two key pieces that I had really gathered. When I went back to the new committee to share and plead my case on why I really wanted to do this research, they had that initial onset of knowing that this research definitely needs to be done. I think that that's what helped it go through. EBE: Wow. I think those are really important reasons. That whole concept of allowing our life experiences to inform our work and to value that. As we start to talk about your research, and I'm really excited to get to share this amazing work you're doing, I thought it might be helpful to define some of the terms that are integral to this research Some of the definitions are a little tough to wrap your arms around because they're not consistent in the literature or are still waiting to develop. Let's start by discussing what you want the listeners to know about the definition for health-related quality of life, or, as we'll call it, HRQL. SELES GADSON: HRQL is operationally defined that it's multi-dimensional. The way I define it a lot in my work is the perception of the individual's ability to lead a fulfilling life in the presence of a chronic disease or disability such as aphasia, but really their perception in five domains. The five domains that I look at in my work are physical, mental, emotional, social communication, and then role, the individual's ability to get back into the activities that they used to be able to do. EBE: Okay, that's really helpful. I think we should also discuss or define patient-reported outcomes or PROs. Sometimes they are also referred to as PROM's, patient-reported outcome measurements. How do they relate to HRQLs? SELES GADSON: Patient-reported outcomes is a health outcome directly reported by the patient without interpretation. Patient-reported outcomes often look at the status of the health condition. The biggest thing about patient-reported outcomes is that it's without the interpretation of the practitioner. So, whatever the patient says is what we're going to take as gold. EBE: Why is it particularly important then to look at HRQOL for Black stroke survivors? SELES GADSON: That's such a great question. And so I want to break it down in two parts. I think the first part is that given the lack of normative data for Black stroke survivors, when we're only looking at clinician-reported outcomes, that's where we get to this bias and the normative bias. I know that there's research out where there are some outcomes to where we're already seeing this five-point difference. And for some research, that five-point difference is considered clinically meaningful. I think that if we're not using these patient-reported reported outcomes, then we put ourselves in a position to contribute to the disparities that we're seeing in standardized assessments. So that's the first answer. The second reason is that we know that nonclinical factors such as physician-race concordance drive up to 80% of what we're seeing in poor functional outcomes in minoritized groups. If we're not asking the person, then we're not able to really understand the things that they want to do, and we're already coming in with this majority type attitude which could influence one's participation in therapy. The last thing that I think is most important, whether you're Black, white, purple, whatever, is that we have these insurance demands that sometimes may not allow us to get to all the things that we may see from an impairment base. By using the patient-reported outcomes, we are helping structure therapy in ways that matter most to the patient. EBE: Well, that reminds me of this amazing quote that I was hoping I could work in today. I circled it in big yellow pen when I first read through your research. You said that it's really important because, due to the lower HRQL that we find in individuals with aphasia, it's “imperative that the development of a treatment plan incorporates what the patient prioritizes. And it's imperative that clinicians have a way to measure these subjective attributes to make a meaningful impact on care.” That's what we want to do. SELES GADSON: So important, because I think what we have to realize is that part of our role as the practitioners providing this skilled intervention, is really helping the individual get back to what they want to do. And I think that if we're not asking them what they want to do, then we're not really able to structure therapy in matters that mean the most to them, but also help them to start to recognize that as part of this identity with aphasia, that there's this new normal for them. Sometimes, individuals are going to rate themselves based off of what they used to be able to do. But if they know that one of their goals was to be able to talk on the phone, or to play bridge with their friends, and we worked on that in therapy, they're now able to look and see, before I scored my telephone confidence at a 50. Now I feel like I'm at a 90, and so sometimes that own self-recognition can support motivation, and can even support therapy, once insurance dollars run out. EBE: I really appreciated doing this deeper dive into PROs as I read through some of your research. And one of the resources I came across was a really interesting table that talked about six categories of PROs. And I'll put a link in the show notes to a 2015 book by Cella, Hahn, Jensen and colleagues called “Patient-Reported Outcomes and Performance Measurement.” (They list six different kinds of PROs in a helpful table.) But the main category that your work is utilizing is actually these HRQL measures. You've been stating why it's so important. HRQL PROs help to frame diagnostics and treatment because you're trying to prioritize what the patient wants and needs-- what they're expressing. SELES GADSON: Right, exactly. I think that one of the things that it's really important for practitioners to understand, is that these things are mandated by what we see in our scope of practice. When I say mandated, I mean we are called to reduce the cost of care by designing and implementing treatment that focuses on helping the individual. If we're not asking the individual what they want to get back to, then I think that we're putting ourself at a position that makes it more challenging to serve in that way. EBE: One of the things we like to do on this podcast is to provide resources that will help clinicians think differently or do something differently tomorrow as they meet face-to-face with their clients. And one of the things I thought we'd put in our show notes is a link to the PROMIS website, because that was something you've used in your research. Do you want to explain a little bit about that website? SELES GADSON: One of the things that I like about the PROMIS website is that it has a list of health outcomes available to use for a range of individuals-- for pediatrics, for adults. I like that it's free, most of them, and I think that it's a good place to start. Some of the outcomes on that website are also even appropriate for in acute care, meaning that they may not take a long time to administer. And so, I think that that's a good place to start. EBE: Well, thank you. And I want to move right into this wonderful paper where you are co-author with Wesley, van der Stelt, Lacey, DeMarco, Snider, & Turkeltaub, that looked at how brain lesion location interacts with HRQL. Can you share a couple key takeaways from that paper?  I hope you'll highlight the one related to depression and HRQL. We're having a lot of research right now around the emotional impact of aphasia and how that will impact recovery outcomes as well. So, tell us a little bit more about that work. SELES GADSON: We looked at the domains of health-related quality of life associated with specific deficits and lesion locations in chronic aphasia. We examined the relationship between HRQL using the Stroke and Aphasia Quality of Life Scale by Hilari and her colleagues, as well as a depression scale, and different impairment-based measures---our battery that we used here. What we found was that language production and depression predicted communication HRQL, meaning that those individuals that reported lower communication HRQL also had a significant depression associated with it. We did lesion symptom mapping in this study. Basically, what we were looking at is to see if HRQL mapped on to discrete areas of the brain. We found that individuals that reported lower psychosocial HRQL had inferior frontal and anterior insula lesions; where individuals who reported lower physical HRQL had lesions in the basal ganglia. This confirmed for us that even though HRQL is this subjective perception, we were seeing it map on to these very specific areas in the brain that also predicted some of the impairment measures that we know of. EBE: That can get us to start thinking about if we have patients with these types of lesions, maybe to be more on the alert for depression. I think that's one point you made. But you also mentioned another important takeaway in the study about the impact of depression on HRQL related to the training of SLPs. This all ties together. What are your thoughts there? SELES GADSON: I think that when we are recognizing that individuals with aphasia are experiencing a new normal, and I think that the research has been very clear on understanding that depression does relate to and contribute to one's communication. I think that there is an opportunity for speech-language pathologists to have more counseling classes. And again, make sure that we're tapping into what the patient wants to do in order to hopefully help mitigate some of those feelings of depression. EBE: I really endorse building those counseling skills in our graduate programs for our students, so they go out feeling more confident and more skilled and knowing that that is going to be an ongoing journey as a speech-language pathologist to build that skill set. SELES GADSON: And shameless plug, I think our episode six of Brain Friends is a mental health episode. I have one of my good girlfriend colleagues there who is a counseling psychologist. She shares with us helping skills for the practitioner, and we share on that episode10 skills that you can do as a clinician to support the person with aphasia. EBE: Thank you for sharing that. That's really important. And again, the link to Brain Friends will be in our show notes. Let's take a moment and talk about how you connect this finding about depression to the role of social communication, because you said it was those scores that were down in your measure. SELES GADSON: With that particular study or overall? EBE: However you'd like to discuss it. I'm opening that door to you. SELES GADSON: One of the things that we were seeing is that individuals were reporting the depression within this Communication HRQL domain. So even though we didn't dive into it too deep in this study, it was more of the correlation and recognizing that individuals that were reporting this higher level of depression, also have this higher level, or this lower report of communication HRQL, making those links specifically. I do have something that I'm working on right now, that will completely answer that question a little bit more solidly. I don't want to speak too much on this, so stay tuned. EBE: Absolutely staying tuned, there's no question. You also had another article that I found intriguing-- An article with your coauthors, Wallace, Young, Vail, and Finn, a 2021 article that examined the relationship between HRQL, perceived social support, and social network size in Black Americans with aphasia. And that paper highlights that there's been little research exploring HRQL in Black Americans. Of the five factors that comprise HRQL, why did you decide to focus on social functioning? And specifically social support and social network in this study? SELES GADSON: Well, that really came from the literature. One of the things that the literature said is that we knew that social HRQL contributed in some way, but we weren't sure what way. And we weren't sure what pieces of social functioning contributed. My apologies to the researcher who said it, but it set me up perfect for my dissertation work to say, “this is why I'm looking at social functioning in these two specific pieces,” because we didn't know. Was it social participation? Was it social network? Was it social support? That was one of the reasons why I wanted to pull out those two specific pieces. The other thing that was really important about this work was that it was the first study that really looked at what HRQL looked like in Black stroke survivors. We didn't know any of that. And so for me, it was really important to compare Black stroke survivors to normal aging Black individuals because I feel that for us to really get baseline understanding of what some of these factors are and how individuals respond in recovery, we have to compare them to their norm, or to other members in their community that look like them before comparing between Black and white or any other ethnic groups. This study is where we found that in terms of HRQL, the main difference between stroke survivors with and without aphasia and in our normal aging individuals, was that communication was the impairment. And then, with the social network and social support, we weren't seeing a difference between this homogenous group of Black people in those areas. EBE: That takes me to my next question, your research noted that the Black survivors with and without aphasia, have smaller social networks compared to white stroke survivors. That's the data that we have based on that social network data. Even though you weren't trying to compare in this study, per se, you still made sense of that finding-- trying to make sure that we don't make assumptions, and instead look at different factors that could be at play. How did you make sense of that finding, the smaller network? SELES GADSON: It was two things that allowed us to make sense of that finding. One was recognizing that in both groups, the stroke survivors with aphasia and our normal aging individuals, that because they were age matched, it could have been a factor of age--meaning that the individuals receiving the support quality and then their network, everyone was kind of in the same age group, and so, it was more of a factor of time of life versus actual culture. But then a lot of that came through in some of the anecdotal reports, and things that we even circled on the scale that we used--we use the Lubben Social Network Scale. With some of those questions, one might be how many people do you feel comfortable sharing personal details with? And often times, we got this report of “just my husband”, or “only God”. And so, we were seeing that some of this really related to the traditional and cultural values in Black Americans, where you're not going to share a lot of stuff with a lot of people. You have your set group, your small network. And that's okay. That doesn't mean that you're isolated.  EBE: I think another point you make, and maybe even thinking back to the ASHA Voices Podcast, why it's particularly important to target social communication. That is yet another life participation core concept. Do you want to speak to that for a moment? SELES GADSON: I think the thing that we have to realize with social communication is that individuals, especially within the black community, they are social, they want to talk, they want to get back to doing and interacting with their community. And so, one of the things that that looks like is maybe being able to participate again in Bible study or being able to stand up and read a scripture. And the only way that you know that, is by asking them that on a patient-reported outcome. I think that that's where that social communication piece is coming in. One of the things that I'm seeing with the Black aphasia group is that moment, that hour, where everyone is together, it's amazing. It's them using social communication. You spoke about how I said that that energized my research, and that was why--because I was on this call, and they were speaking about these things, that sometimes I feel like I have to explain to the powers that be why social communication or the LPAA approach is important. But here I was talking with all of these survivors, and they were telling me, I want to be able to communicate, I want to be able to do these things. It just really confirmed for me that this type of research, we were on the right path. EBE: Right. And this is my chance for a “shameless plug” because of my life work, and that is just the power of groups. The power of groups is amazing. SELES GADSON: You know, your life work and... EBE: Well, we don't want to go there, this episode is about you. SELES GADSON: Okay. I'm telling you; I'll get into just how influential your work has been, even when I was working as a practitioner and doing group therapy, it was your work and your research that I was going to. EBE: Well, I had the honor of getting to work with Dr. Roberta Elman, and starting the Aphasia Center of California and doing that initial research, that has been such a gift to me, so, but thank you, back to your work now. That's a great transition, because I'm going to bring us to your 2022 study, looking at how aphasia severity is modulated by race and lesion size in chronic survivors. That was an amazing study. I'm going to read another quote here from that study. And that is, “understanding the origin of disparities in aphasia outcomes is critical to any efforts to promote health equity among stroke survivors with aphasia.” You said this work led you to an “Aha!” moment. And I'd love for you to share more about that moment, and about this study. SELES GADSON: Yes, this was one of my babies, I would say it was definitely a labor of love. And it's been well received. One of the things that led us to this study was that we were already aware of what the research was saying, in regards to the narrative of Black stroke survivors having these lower scores, they were having poor functional outcomes, longer hospital stays. I really wanted to understand what components neurologically, were playing into that. The research has shown that Black Americans often may have a larger stroke due to a myriad of factors-- delayed hospital arrival, not being able to receive TPA. But I wanted to know what factors neurologically were contributing to what we were seeing, not only in this baseline difference that we were seeing, but what was the bigger picture essentially. What we found was that when we looked at race and lesion size, when we did an interaction of race and lesion size, that Black and white survivors with small lesions performed similarly. But larger strokes resulted in more severe aphasia for Black people, than white people. And that was something that we didn't quite understand, because if you think about it, the larger the lesion, the poorer your aphasia should be. But in this case, the larger the lesion, the white stroke survivors were performing better and so we offered two reasons for that. One was the potential assessment bias-- that maybe with the larger stroke, there was this code-switching element that the Black stroke survivors just weren't able to do. And we were seeing that in the larger strokes, and it wasn't being picked up in the smaller strokes. Then the other was the disparity that I had mentioned earlier, which is that access to rehabilitation. It might have been more evident-- we were seeing some of those disparities in the larger strokes. We know that individuals that come from higher earning SES groups have greater access to rehabilitation services like speech and language. That was our other reason, that we were wondering if that's why we were seeing that outcome. EBE: This reminds me some of the research that Dr. Charles Ellis has been doing. I attended his keynote speech at the IARC conference in 2022 that talked about understanding what is happening upstream, because it's going to impact what's happening downstream. In terms of health disparities, it's going to have an impact. I think your research supports that. We need to learn more about it and do the research you're doing. As you reflect on your findings across these amazing studies, this research that you've been doing, can you offer to our listeners some tips on how to have more confidence with intercultural contact? SELES GADSON: That's a great question. I think the first thing that that you have to do is put yourself in places where you are connecting with people that don't look like you. EBE: I agree. And that can be hard and challenging to do. SELES GADSON: It can be, but one of the things that I say is that it goes back to some of the things that Dr. Ellis has talked about, which is being intentional. That might mean going to a different side of the neighborhood to support a Black owned business, and being within that space, to feel how it feels to be around different cultures. The other thing that I think is really important, and it comes out of literature that looks at reducing racial bias in health care, which is to avoid stereotype suppression. So oftentimes, people may be thinking something and they don't want to share it, or they try to suppress it. And the reason why that's negative is because stereotype is a cognitive organization strategy that we use. And where it becomes negative is that if you're having these stereotype ideas, or you're just not sure, if you're not able to express them within a space that you feel comfortable with, then you suppress them. And then it kind of comes out in therapy. And so, I think that those are two huge things. And then the last thing that I would say is that it's really important to build partnerships. And so, building partnerships, either with local churches, within the university area, or just seeing how you can serve in order to help create some of that confidence. But you have to put yourself out there and not wait until therapy day. EBE: Wow, thank you for those tips. And one of them reminded me of something, a tip that a local educator suggested that, even if you don't feel like you're in an environment where your everyday social context might put you with people who look different from you, that you can still listen to other voices by listening to podcasts, sign up for podcasts, sign up for Twitter feeds of people with different voices, so you can start being present to that conversation. So that was something that I have found useful and really good advice as well. SELES GADSON: So true. The other thing that I did, even someone who identifies as a Black American when I was doing my dissertation work, and previously before some other things in my career, I noticed that perspective taking was a huge piece--putting myself or imagining myself in the individual's shoes. And so, for me, that meant that I went to Black museums and exposed myself to different cultural experiences. I wasn't going into some of these spaces, whether it was collecting data or even working with individuals from other earning communities, with some type of privilege. So even in that sense, I wanted to make sure that I checked my privilege as well by doing that perspective taking. EBE: Thank you,. And this discussion could keep going, but I know our time is getting tight here. This whole effort that you put in your research of looking at HRQL measures reminds me of some of the work that I've really admired by Hilari and you had a wonderful story you could share about her, your interaction and your use of her work. Would you like to share that quickly? SELES GADSON: Oh, she's so awesome. I was sharing how when I first was diving into this literature, her work was one of the pieces that I found, the Stroke and Aphasia Quality of Life Scale. I reached out to her and she shared this scale. And a couple of years later, I attended the International Aphasia Rehabilitation Conference in London. And she sat down with me. I asked her if she had any time, if we could just talk, and she was so welcoming. We sat down, and she might not even remember this, but even in that moment of us being able to talk about these things that we were both so passionate about, she just really spoke to me and encouraged me. And it's so funny, because now as I publish and do different things, my mom always says, “you gonna be just like Dr. Hilari.” EBE: Let's just do a shout out for mentorship, for people who take the time, and feel committed and passionate. Again, we're using that word again today, passionate, to support the new voices that are coming into the field. So that's the gift of mentorship. And in this whole discussion, you and I also talked about how important it is to be inclusive, and we talked about how HRQL measures sometimes are harder to use with people with severe aphasia and how they can get excluded from research. It's hard enough to get people with aphasia into the research, right? There's work by Shiggins and her colleagues looking at how often people with aphasia are excluded. But you made a good point about ways that we can include people with more severe aphasia. Do you want to mention that? SELES GADSON: I think one of the things that we have at our fingertips, and we know just from our training, is to use different visual cues to support those individuals that might have more severe aphasia. One of the things that we highlighted in the 2020 paper looking at the psychometric properties of quality of these patient reported outcomes, was that there are certain assessments that are perfect for individuals with severe aphasia, assessments like the Assessment for Living with Aphasia (ALA), because it has the pictures available and it has simple language. Just recognizing that even by using some of these compensation tools, whether it's pictures or modifying the language, we can still get the individual's perspective of what they want in therapy just by using some of these modifications. EBE: This reminds me, I can put one more link and resource into the show notes, because the Center for Research Excellence in Aphasia offers this wonderful speaker series. And there was just an excellent recent session by Dr. Shiggins on including people with aphasia in research. So, I'll put that link in. I want everybody to listen to that presentation. And finally, as our closing question for today, Davetrina, if you had to pick only one thing we need to achieve urgently as a community of providers, of professionals, what would that one thing be? SELES GADSON: I think we have to start using patient-reported outcomes. I think that if you were doing a clinician-reported outcome to assess the impairment, paired with that has to be some level of patient-reported outcome that will give you insight into what the patient wants to do. It's no longer optional. I think that we have to make it a paired thing with our clinician-reported outcome, is getting the perspective of the patient. EBE: I so agree with you, thank you. Thank you for this wonderful interview today. I really, really appreciate it. SELES GADSON: Thank you. EBE: And I want to thank our listeners for listening today. For references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. And there, you can also become a member of this organization. Browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. For Aphasia Access Conversations, I'm Ellen Bernstein Ellis and thank you again for your ongoing support of aphasia access. References and Resources Brain Friends Podcast: https://www.aphasia.org/stories/brain-friends-a-podcast-for-people-with-aphasia/ https://www.facebook.com/groups/1563389920801117 https://open.spotify.com/show/5xgkrhUhEIzJgxpRXzNpBH   Centers for Disease Control and Prevention (CDC) HRQL website: https://www.cdc.gov/hrqol/concept.htm     National Aphasia Association  Black American Conversation group registration: The Black American Aphasia Conversation Group meets through Zoom every other Monday at 4:00pm EST (1:00pm PST) . If you are interested in joining this group, please complete the form https://docs.google.com/forms/d/e/1FAIpQLSfJN9VWjrujhebT8Z48bqDZePOHYotipFC34S8T0X8_o8rG-g/viewform Patient Reported Outcome Measurement System (PROMIS) https://www.promishealth.org/57461-2/   Cella, D., Hahn, E. A., Jensen, S. E., Butt, Z., Nowinski, C. J., Rothrock, N., & Lohr, K. N. (2015). Patient-reported outcomes in performance measurement. . Research Triangle Park (NC): RTI Press; 2015 Sep. Publication No.: RTI-BK-0014-1509ISBN-13: 978-1-934831-14-4  https://www.ncbi.nlm.nih.gov/books/NBK424378/   Gadson, D. S., Wallace, G., Young, H. N., Vail, C., & Finn, P. (2022). The relationship between health-related quality of life, perceived social support, and social network size in African Americans with aphasia: a cross-sectional study. Topics in Stroke Rehabilitation, 29(3), 230-239.   Gadson, D. S. (2020). Health-related quality of life, social support, and social networks in African-American stroke survivors with and without aphasia. Journal of Stroke and Cerebrovascular Diseases, 29(5), 104728.   Gadson, D. S. (2020). Health-related quality of life, social support, and social networks in African-American stroke survivors with and without aphasia. Journal of Stroke and Cerebrovascular Diseases, 29(5), 104728.   Gadson, D. S., Wesley, D. B., van der Stelt, C. M., Lacey, E., DeMarco, A. T., Snider, S. F., & Turkeltaub, P. E. (2022). Aphasia severity is modulated by race and lesion size in chronic survivors: A retrospective study. Journal of Communication Disorders, 100, 106270   Gray, J. D. (2022). Transcript: ASHA Voices: Confronting Health Care Disparities. Leader Live. https://leader.pubs.asha.org/do/10.1044/2021-0902-transcript-disparities-panel-2022   Law, B. M. (2021). SLP Pioneers Research on Aphasia Rehab for African Americans. Leader Live https://leader.pubs.asha.org/do/10.1044/leader.FTR4.26092021.58   Lubben, J., Gironda, M., & Lee, A. (2002). Refinements to the Lubben social network scale: The LSNS-R. The Behavioral Measurement Letter, 7(2), 2-11.   Shiggins, C., Ryan, B., O'Halloran, R., Power, E., Bernhardt, J., Lindley, R. I., ... & Rose, M. L. (2022). Towards the consistent inclusion of people with aphasia in stroke research irrespective of discipline. Archives of Physical Medicine and Rehabilitation, 103(11), 2256-2263.   Shiggins, C.  (2023) The road less travelled: Charting a path towards the consistent inclusion of people with aphasia in stroke research.  Aphasia CRE Seminar Series  #36 (Video) https://www.youtube.com/watch?v=sqVfn4XMHho

Aphasia Access Conversations
Episode #90: Texting for Success in Aphasia Rehabilitation - A Conversation with Jaime Lee

Aphasia Access Conversations

Play Episode Listen Later Sep 13, 2022 46:32


Interviewer I'm Ellen Bernstein-Ellis, Program Specialist and Clinical Supervisor for the Aphasia Treatment Program at Cal State East Bay and a member of the Aphasia Access Podcast Working Group. AA's strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.  Today, I have the honor of speaking with Dr. Jamie Lee who was selected as a 2022 Tavistock Distinguished Scholar. We'll discuss her research interests and do a deeper dive into her work involving the study of texting behaviors of individuals with aphasia and her efforts to develop an outcome measure that looks at success at the transactional level of message exchange.  As we frame our podcast episodes in terms of the Gap Areas identified in the 2017 Aphasia Access State of Aphasia  Report by Nina Simmons-Mackie, today's episode best addresses Gap areas:  Insufficient attention to life participation across the continuum of care;  Insufficient training and protocols or guidelines to aid implementation of participation-oriented intervention across the continuum of care;  Insufficient or absent communication access for people with aphasia or other communication barriers  For more information about the Gap areas, you can listen to episode #62 with Dr. Liz Hoover or go to the Aphasia Access website.   Guest bio Jaime Lee is an Associate Professor in the department of Communication Sciences and Disorders at James Madison University. Jaime's clinical experience goes back nearly 20 years when she worked as an inpatient rehab SLP at the Rehabilitation Institute of Chicago (now Shirley Ryan Ability Lab). She later worked for several years as a Research SLP in Leora Cherney's Center for Aphasia Research and Treatment. Jaime earned her PhD at the University of Oregon, where she studied with McKay Sohlberg. Her research interests have included evaluating computer-delivered treatments to improve language skills in aphasia, including script training and ORLA, examining facilitation of aphasia groups, and most recently, exploring text messaging to improve participation, social connection and quality of life in IWA.   Listener Take-aways In today's episode you will: Learn about why texting might be a beneficial communication mode for IwA Explore the reasons it's important to consider the communication partner in the texting dyad Find out more about measures examining texting behaviors, like the Texting Transactional Success (TTS) tool. Consider how Conversational Analysis may be helpful in understanding texting interactions Edited show notes Ellen Bernstein-Ellis Jamie, welcome to the podcast today. I'm so excited that we finally get to talk to you. And I want to offer a shout out because you mentioned two mentors and colleagues who I just value so much, McKay Solberg and Leora Cherney, and I'm so excited that you've also had them as mentors.   Jaime Lee  02:44 Thanks, Ellen. It's really great to talk with you today. And speaking of shout outs, I feel like I have to give you a shout out because I was so excited to meet you earlier this summer at IARC. We met at a breakfast. And it was exciting because I got to tell you that I assigned to my students your efficacy of aphasia group paper, so it was really fun to finally meet you in person.   Ellen Bernstein-Ellis  03:11 Thank you, that is the paper that Roberta Elman was first author on. I was really proud to be part of that.   I was excited to get to come over and congratulate you at the breakfast on your Tavistock award. I think it's very, very deserving. And I'm excited today that we can explore your work and get to know each other better. And I'm just going to start with this question about the Tavistock. Can you share with our listeners what you think the benefits of the Tavistock Distinguished Scholar Award will be to your work? Jaime Lee  03:43 Sure, I think first off being selected as a Tavistock Distinguished Scholar has been really validating of my work in terms of research and scholarship. It's made me feel like I'm on the right track. And at least maybe I'm asking the right kinds of questions. And it's also really meaningful to receive an award that recognizes my teaching and impact on students. And I was thinking about this and a conversation that I had with my PhD mentor McKay Solberg. And it was early into my PhD when we were talking about the impact of teaching and how important it was, where she had said that when we work as a clinician, we're working directly with clients and patients were hopefully able to have a really positive meaningful impact. But when we teach, and we train the next generation of clinicians, you know, we have this even greater impact on all of the people that our students will eventually work with throughout their career. And so that's just huge.  Ellen Bernstein-Ellis  04:51 It really is huge. And I have to say I went to grad school with McKay and that sounds like something she would say, absolutely, her value of teaching.  I just want to do a quick shout out to Aphasia Access, because I think they also recognize and value the importance of teaching. They have shown that commitment by their LPAA curricular modules that they developed and make accessible to Aphasia Access members, so people can bring content right into their coursework, which is helpful because it takes so much time to prepare these materials. So, if you haven't heard of these curricular modules yet, please go to the website and check them out.  So yes, I'm so glad that you feel your work is validated. It's really important to validate our young researchers.  I think there's an opportunity to expand who you meet during this year. Is that true? Jaime Lee  05:40 That is already true. This honor has already led to growing connections with other aphasia scholars and getting more involved with Aphasia Access. I'm excited to share that I'll be chairing next year's 2023 Aphasia Access Leadership Summit together with colleagues Esther Kim and Gretchen Szabo. We're really enthusiastic about putting together a meaningful and inspiring program. I am just really grateful for the opportunity to have a leadership role in the conference. Ellen Bernstein-Ellis  06:17 Wow, that's a fantastic team. And I, again, will encourage our listeners, if you've never been to a Aphasia Access  Leadership Summit, it is worth going to and everybody is welcomed. We've had several podcast guests who have said that it has been a game changer for them-- their first attendance at the Leadership Summit. So, we'll be hearing more about that.  Well, I want to start our interview today by laying some foundation for your work with texting and developing some outcome measures for treatment that captures transactional exchange in individuals with aphasia. And let me just ask what piqued your interest in this area? Jaime Lee  06:57 Yeah, thanks. Well, before I got interested specifically, in texting, I had this amazing opportunity to work as a research SLP with Leora Cherney and her Center for Aphasia Research and Treatment. And we all know Leora well for the contributions she's made to our field. At that time, she had developed ORLA, oral reading for language and aphasia, and a computerized version, and also a computerized version of aphasia scripts for script training. And these were treatments that not only improve language abilities in people with aphasia, but I really had this front row seat to seeing how her interventions really made a difference in the lives of people with aphasia, and help them reengage in the activities that they wanted to pursue-- reading for pleasure and being able to converse about topics that they want to do with their script training. So at the same time, I was gaining these really valuable research skills and understanding more about how to evaluate treatment. I was also able to start learning how to facilitate aphasia groups because Leora has this amazing aphasia community that she developed at what was then RIC. I'm just really grateful for the opportunity I had to have Leora as a mentor, and now as a collaborator. And her work really helped orient me to research questions that address the needs of people with aphasia, and to this importance of building aphasia community. Ellen Bernstein-Ellis  08:37 Wow, that sounds like a really amazing opportunity. And I think it's wonderful that you've got to have Leora as a mentor and to develop those interests. Then look at where you're taking it now. So that's really exciting to talk about with you today. Jaime Lee  08:54 As for the texting interest that really started after I earned my PhD and was back at the Rehab Institute, now Shirley Ryan Ability Lab, Leora was awarded a NIDILRR field initiated grant and I served as a co-investigator on this grant. It was a randomized, controlled trial, evaluating ORLA, combined with sentence level writing.  The two arms of the trial were looking at ORLA plus writing using a handwriting modality, versus ORLA combined with electronic writing or we kind of thought about this as texting. So we call that arm T-write. And ORLA was originally designed to improve reading comprehension, but we know from some of Leora's work that there were also these nice cross-modal language improvements, including improvements in written expression. This was a study where we really were comparing two different arms, two different writing modalities, with some secondary interest in seeing if the participants who were randomized to practice electronic writing, would those improvements potentially carry over into actual texting, and perhaps even changes in social connectedness? Ellen Bernstein-Ellis  10:15 Those are great questions to look at. Interest in exploring texting's role in communication has just been growing and growing since you initiated this very early study. Jamie, would you like to explain how you actually gathered data on participants texting behaviors? How did that work? Jaime Lee  10:32 Yes. So we were very fortunate that the participants in this trial, in the T-write study, consented to have us extract and take a look at their real texting data from their mobile phones prior to starting the treatment. So, for those who consented, and everyone, I think we had 60 participants in the trial, and every single participant was open to letting us look at their texts and record them.    We recorded a week's worth of text messages between the participant and their contacts at baseline, and then again at a follow up point after the treatment that they were assigned to. And that was so that maybe we could look for some potential changes related to participating in the treatment. So maybe we would see if they were texting more, or if they had more contacts, or maybe they might even be using some of the same sentences that were trained in the ORLA treatment. We haven't quite looked at that, the trial just finished so we haven't looked at those pre/ post data. But when my colleagues at Shirley Ryan and I started collecting these texting data, we realized there were some really interesting things to be learned from these texts.  And there have been a couple of studies, we know Pagie Beeson's work, she did a T-CART study on texting, right? And later with her colleague, Mira Fein. So we had some texting studies, but nothing that really reported on how people with aphasia were texting in their everyday lives.  Ellen Bernstein-Ellis  12:08 Well, Jamie, do you want to share what you learned about how individuals with aphasia texts are different from individuals without aphasia? Jaime Lee  12:15 We saw that first, people with aphasia do text, there were messages to be recorded. I think only a couple of participants in the trial didn't have any text messages. But we took a look at the first 20 people to enroll in the trial. We actually have a paper out-- my collaborator, Laura Kinsey is the first author. This is a descriptive paper where we describe the sample, 20 people, both fluent aphasia and nonfluent aphasia, a range of ages from mid 30s up to 72. And one striking finding, but maybe not too surprising for listeners, is that the participants with aphasia in our sample texted much less frequently than neurologically healthy adults, where we compared our findings to Pew Research data on texting. And our sample, if we took an average of our 20 participants and look at their texts sent and received over a week, over the seven days, they exchanged an average of about 40 texts over the week. Adults without aphasia, send and receive 41.5 texts a day. Ellen Bernstein-Ellis  13:36 Wow, that's quite a difference. Right?  Jaime Lee  13:39 Yes, even knowing that younger people tend to text more frequently than older adults. Even if we look at our youngest participants in that sample who were in their mid 30s, they were sending and receiving text much less frequently than the age matched Pew data. Ellen Bernstein-Ellis  13:56 Okay, now, I want to let our listeners know that we're going to have the citation for the Kinsey et al. article that you just mentioned in our show notes. How can we situate addressing texting as a clinical goal within the life participation approach to aphasia?  Jaime Lee  14:14 I love this question. And it was kind of surprising from the descriptive paper, that texting activity, so how many texts participants were sending and receiving, was not correlated with overall severity of aphasia or severity of writing impairment?  Ellen Bernstein-Ellis I'm surprised by that. Were you?    Jaime Lee Yes, we thought that there would be a relationship. But in other words, having severe aphasia was not associated with texting less. And we recognize, it's dangerous to draw too many conclusions from a such a small sample. But a major takeaway, at least an aha moment for us, was that we can't make assumptions about texting behaviors based on participants' language impairments, also based on their age, their gender. You know, in fact, our oldest participant in the sample, who was 72, was actually most active texter. He sent and received 170 texts over the week period. Ellen Bernstein-Ellis  15:22 Wow, that does blow assumptions out of the water there, Jamie. So that's a really good reminder that this to be individualized with that person at the center? Because you don't know.  Jaime Lee  15:32 You don't know. Yeah. And I think it comes down to getting to know our clients and our patients, finding out if texting is important to them. And if it's something they'd like to be doing more of, or doing more effectively, and going from there.    Ellen Bernstein-Ellis Wow, that makes a lot of sense.    Jaime Lee   Yeah, of course, some people didn't text, before their stroke and don't want to text. But given how popular texting has become as a form of communication, I think there are many, many people with aphasia, who would be interested in pursuing texting as a rehab goal.   Ellen Bernstein-Ellis  16:08 Right? You really have to ask, right?    Jaime Lee  16:11 Yes, actually, there's a story that comes to mind about a participant who was in the T-write study, who had stopped using her phone after her stroke. Her family had turned off service; she wasn't going to be making calls or texting.   Ellen Bernstein-Ellis Well, I've seen that happen too many times.  Jaime Lee   And when she enrolled in the study, and she was a participant at Shirley Ryan, because we ran participants here at JMU and they ran participants in Chicago. And she was so excited. I heard from my colleagues that she went out and got a new phone so that she could use her phone to participate in the study. And then her follow up data. When we look at her real texts gathered after the study at the last assessment point, her text consists of her reaching out to all of her contacts with this new number, and saying hello, and getting in touch and in some cases, even explaining that she'd had a stroke and has aphasia.  Ellen Bernstein-Ellis  17:13 Oh, well, that really reminds me of the value and importance of patient reported outcomes, because that may not be captured by a standardized test, per se, but man, is that impactful. Great story. Thank you for sharing that. So well, you've done a really nice job in your 2021 paper with Cherney that's cited in our show notes of addressing texting's  role in popular culture and the role it's taking in terms of a communication mode. Would you explain some of the ways that conversation and texting are similar and ways that they're different? Jaime Lee  17:45 That is a great question, Ellen and a question I have spent a lot of time reading about and thinking about. And there is a great review of research that used conversation analysis (CA) to study online interactions. This is a review paper by Joanne Meredith from 2019. And what the review tells us is that there are many of the same organizing features of face to face conversation that are also present in our online communications. So we see things like turn taking, and we see conversation and texting or apps unfold in a sequence. So what CA refers to as sequential organization.  We also see, just like in face to face conversation, there are some communication breakdowns or trouble sources in online communication. And sometimes we see the need for repair to resolve that breakdown. Ellen Bernstein-Ellis  18:45 Yeah, Absolutely. I'm just thinking about auto corrects there for a moment. Jaime Lee  18:51 And they can cause problems too. When the predictive text or the AutoCorrect is not what we meant to say that can cause a problem.Ellen Bernstein-Ellis  18:59 Absolutely. Those are good similarities, I get that.   Jaime Lee  19:03 I think another big similarity is just about how conversation is co-constructed. It takes place between a person and a conversation partner and in texting, we have that too. We have a texting partner, or in the case of a group text, we have multiple partners. There's definitely similarities. And another big one is that purpose, I think we use conversation ultimately, and just like we're using texting to build connection, and that's really important Ellen Bernstein-Ellis  19:32 Yeah, I can really see all of those parallels. And there are some differences, I'm going to assume. Jaime Lee  19:39 Okay, yes, there are some definite interesting differences in terms of the social aspects of conversation. We do a lot in person, like demonstrating agreement, or giving a compliment, or an apology, or all of these nonverbal things we do like gesture and facial expression and laughter. Those nonverbal things help convey our stance, or affiliation, or connection. But in texting, we can't see each other. Right? So we have some different tools to show our stance, to show affiliation. What we're seeing is people using emojis and Bitmojis, and GIFs, even punctuation, and things like all capitals. We've all seen the all caps and felt like someone is yelling at us over text, that definitely conveys a specific tone, right? Ellen Bernstein-Ellis  20:34 I was just going to say emojis can be a real tool for people with aphasia, right? If the spelling is a barrier, at least they can convey something through an image. That's a real difference.   Jaime Lee  20:45 Absolutely, I think some of the problematic things that can happen and the differences with texting have to do with sequencing and timing. Because people can send multiple texts, they can take multiple turns at once. And so you can respond to multiple texts at once, or that can lead to some confusion, I think we're seeing, but texting can also be asynchronous, so it's not necessarily expected that you would have to respond right away Ellen Bernstein-Ellis  21:16 So maybe giving a person a little more time to collect their thoughts before they feel like they have to respond versus in a person-to-person exchange where the pressure is on?    Jaime Lee   Absolutely, absolutely.  Ellen Bernstein-Ellis Well, why might texting be a beneficial communication mode for individuals with aphasia, Jamie, because you have spelling challenges and all those other things.   Jaime Lee  21:37 Yeah, I think it comes back to what you just said, Ellen, about having more time to read a message, having more time to be able to generate a response. I know that texting and other forms of electronic communication like email, can give users with memory or language problems a way to track and reread their messages. And in some cases, people might choose to bank responses that they can use later. We know this from actually some of Bonnie Todis and McKay Sohlberg's work looking at making email more accessible for users with cognitive impairment. So I think there are some really great tools available to people with aphasia to feel successful using texting. Ellen Bernstein-Ellis  22:30 That's great. I think banking messages is a really important strategy that we've used before, too.  Jaime Lee  22:37 So there's all these other built-in features, that I'm still learning about that are in some mobile phones, that individuals with aphasia can potentially take advantage of. I think some features might be difficult, but there are things like we've just talked about, like the predictive text or the autocorrect. And then again, all these nonlexical tools, like the emojis and the GIFS and being able to link to a website or attach a photograph. I think this is a real advantage to communicating through text. Ellen Bernstein-Ellis  23:10 It lets you tell more of the story, sometimes. One of my members talks about when his spelling becomes a barrier, he just says the word and then that speech-to-text is really helpful. It's just one more support, I guess.   Jaime Lee  23:24 Yes. And we're needing to find out a little bit more about the features that people are already using, and maybe features that people don't know about, but that they would like to use like that speech-to-text. That's a great point.    Ellen Bernstein-Ellis  23:37 Well, how did you end up wanting to study texting for more than an amount of use or accuracy? In other words, what led you to studying transaction? Maybe we can start with a definition of transaction for our listeners?  Jaime Lee  23:51 Sure. Transaction in the context of communication is the exchange of information. So it involves understanding and expression of meaningful messages and content. And this is a definition that actually comes from Brown and Yule's concepts of transaction and interaction and communication. So Brown, and Yule tell us that transaction again, is this exchange of content, whereas interaction pertains to the more social aspects of communication. Ellen Bernstein-Ellis  24:26 Okay, thank you. I think that's really good place to start. Jaime Lee  24:29 Part of the interest in transaction, first came out of that descriptive paper where we were trying to come up with systems to capture what was going on. So we were counting words that the participants texted and coding whether they were initiated or are they texts that are simple responses. We counted things they were doing, like did they use emojis or other multimedia? But we were missing this idea of how meaningful their text were and kind of what was happening in their texting exchanges. So this kind of combined with another measure we had, it was another measure in T-write really inspired by Pagie Beeson and Mira Fein's paper where they were using some texting scripts in their study.  We also love scripting. We wanted to just have a simple measure, a simple brief texting script that we could go back and look at. We had as part of our protocol a three turn script. And I remember we sat around and said, what would be a really common thing to text about? And we decided to make a script about making dinner plans. And so we're collecting these simple scripts. And as I'm looking at these data coming in, I'm asking myself, what's happening here? How are we going to analyze what's happening? What was important didn't seem to be spelling or grammar. What seemed most important in this texting script was how meaningful the response was. And ultimately, would the person be able to make dinner plans and go plan a dinner date with a friend. So it seemed like we needed a measure of successful transaction within texting. Ellen Bernstein-Ellis  26:23 Jamie, I'm just going say that that reminded me of one of my very favorite papers, whereas you started out counting a lot of things that we can count, and it did give you information, like how much less people with aphasia are texting compared to people without aphasia, and I think that data is really essential. But there's a paper by Aura Kagan and colleagues about counting what counts, right, not just what we can count. And we'll put that citation and all the citations in the show notes-- you're  bringing up some wonderful literature. So I think you decided to make sure that you're counting what counts, right? In addition to what we can count.    Jaime Lee  26:59 Yes. And I do love counting. I was trained at the University of Oregon in single case experimental design. So really, behavioral observation and counting. So I am a person who likes to count but that sounds, like counting what counts. I love that. Ellen Bernstein-Ellis  27:13 Yeah, absolutely. In that 2021 paper, you look at the way some researchers have approached conversational analysis measures and you acknowledge Ramsberger and Rende's 2002 work that uses sitcom retells in the partner context. And you look at the scale that Leaman and Edmonds developed to measure conversation. And again, I can refer listeners to Marion Leaman's podcast as a 2021 Tavistock distinguished scholar that discusses her work on capturing conversation treatment outcomes, but you particularly referred to Aura Kagan and colleagues' Measurement of Participation in Conversation, the MPC. We'll put the citation in the show notes with all the others, but could you describe how it influenced your work?   Jaime Lee  27:58 Yeah, sure. That's funny that you just brought up a paper by Aura Kagan, because I think I'll just first say how much Aura's work on Supported Conversation for Adults with Aphasia, SCA, how influential it's been throughout my career. First as a clinician and actually interacting with people with aphasia, and then later in facilitating conversation groups and helping to train other staff on the rehab team, the nursing staff. And now, it's actually a part of my coursework that I have students take the Aphasia Institute's free eLearning module, the introduction to SCA, as part of my graduate course, and aphasia, and all of the new students coming into my lab, do that module. So they're exposed really early on to SCA. Ellen Bernstein-Ellis  28:50 I'm just gonna say me too. We also use that as a training tool at the Aphasia Treatment Program, It's really been a cornerstone of how we help students start to learn how to be a skilled communication partner. So I'm glad you brought that up. Jaime Lee  29:03 Absolutely. So yes, Kagan's Measurement of Participation in Conversation (MPC), was really influential in developing our texting transactional success rating scale. And this is a measure that they created to evaluate participation and conversation. And they were looking actually both at transaction and interaction, I needed to start simply and just look at transaction first. They considered various factors. They have a person with aphasia and a partner engage in a five minute conversation. And they looked at factors like how accurately the person with aphasia was responding, whether or not they could indicate yes/no reliably, and could they repair misunderstandings or miscommunications. And then the raters made judgments on how transactional was that conversation? So, we looked at that measure and modeled our anchors for texting transactional success after their anchors. We had a different Likert scale, but we basically took this range from no successful transaction, partial transaction, to fully successful. And that was really modeled after their MPC.   Ellen Bernstein-Ellis  30:17 Wow. Thank you for describing all of that. Jaime Lee  30:20 Yeah. Another big takeaway I'll add is that, and this really resonated with what we were hoping to capture, the scores on the MPC weren't necessarily related to traditional levels of severity. So Kagan and colleagues write that someone even with very severe aphasia, could score at the top of the range on the MPC. And I think similarly, what we feel about texting is even someone with severe writing impairments could be very successful, communicating via text message, really, depending on the tools they used, and perhaps, depending on the support they received from their texting partner.   Ellen Bernstein-Ellis  31:02 You and your colleagues develop this Texting Transaction Success tool, the TTS, right? What is the goal of this measure?    Jaime Lee  31:13 The goal of the TTS is to measure communicative success via texting. We wanted this functional measure of texting, not limited to accuracy, not looking specifically at spelling, or syntax, or morphology, but something that reflected the person with aphasia-- his ability to exchange meaningful information. I think the measure is really grounded in the idea that people with aphasia are competent and able to understand and convey meaningful information even despite any errors or incorrect output. So this is really relevant to texting because lots of us are using texting without correct spelling or without any punctuation or grammar. Yet lots and lots of people are texting and conveying information and feeling that benefit of connecting and exchanging information. Ellen Bernstein-Ellis  32:08 It sounds like a really helpful tool that you're developing. Could you please explain how it's used and how it's scored? Jaime Lee  32:16 Sure. So the TTS is a three-point rating scale that ranges from zero, which would be no successful transaction, no meaningful information exchanged, one, which is partial transaction, to two, which is successful transaction. And we apply the rating scale to responses from an individual with aphasia on the short texting script that I was talking about earlier. So this is a three-turn script that is delivered to a person with aphasia where the first line there, we ask them to use their mobile phone or give them a device, and the prompt is: “What are you doing this weekend?” We tell the person to respond any way they want, without any further cues. And then the script goes on, we deliver another prompt, “What about dinner?” And then another prompt, “Great, when should we go?” Each of those responses, we score on the TTS rating scale. We give either a zero, a one or a two. We have lots of examples in the paper of scores that should elicit a zero, a one or a two.We feel like it should be pretty easy for readers to use.   Ellen Bernstein-Ellis  33:33 Wow, that's going to be really important. I always appreciate when I can see examples of how to do things. Jaime Lee  33:40 We did some really initial interrater reliability on it. The tools are pretty easy to score. We're able to recognize when something is fully transactional, even if it has a spelling error or lexical error, we can understand what they're saying. And a zero is pretty easy to score, if there are graphemes letters that don't convey any meaning, there's no transaction. Where things are a little more interesting, are the partial transaction. I think about an example to “What about dinner” and the participant responded, “Subway, Mexico.” So that's a one because the conversation, the texting partner, would really need to come back and clarify like, “Do you want to get a Subway sandwich?”  Or “Do you want to go eat Mexican?” It could still be really transactional, and they could resolve that breakdown, but the partner would have a little bit more of a role in clarifying the information. Ellen Bernstein-Ellis  34:36 When you were actually trying to validate the TTS and establish its interrater reliability in your 2021 article with Cherney you mentioned using the Technology Confidence Survey from the 2021 Kinsey et al. article. Having tools that allow us to understand our clients' technology user profile is really informative in terms of understanding what modes of communication might be important to them. We talked earlier about not assuming, right, not assuming what people want to do or have done. Can you describe the survey? And is it available? Jaime Lee  35:13 Sure, yes. This is a survey we developed for the T-write study, the ORLA Plus Electronic Writing study. It's a simple aphasia friendly survey with yes/no questions and pictures that you can ask participants or clients about their technology usage. from “Are you using a computer? Yes or No” or  “Are using a tablet?”, “Are you using a smartphone?”  We ask what kinds of technology they're using and then what are they using it for? Are they doing email? Are they texting? Are they looking up information? Are they taking photos?  It also has some prompts to ask specifically about some of the technology features like “You're texting? Are you using voice to text?” or “Are you using text to speech to help you with reading comprehension of your text?”  At the very end, we added some confidence questions. We modeled this after Leora Cherney and Ed Babbitt's Communication Confidence Rating scale. So we added some questions like, “I am confident in my ability to use my smartphone” or “I am confident in my ability to text” and participants can read that on a rating scale. We use this in the context of the research study to have some background information on our participants. I think it could be a really great tool for starting a conversation about technology usage and goals, with people who are interested in using more technology, or are using it in different ways. This (survey) is in the Kinsey et al. article. It's a supplement that you can download. It's just a really good conversation starter, that when I was giving the technology survey to participants, many times they would take out their phone or take out their iPad and say, “No, I do it. I use it just like this”. It was really hands on and we got to learn about how they're using technology. And I definitely learned some new things that are available. Ellen Bernstein-Ellis  37:20 I think many of us use kind of informal technology surveys.  I'm really excited to see the very thoughtful process you went through to develop and frame that (technology use). That's wonderful to share. Jamie, can you speak to the role of the TTS in terms of developing and implementing intervention approaches for texting? You just mentioned goals a moment ago? Jaime Lee  37:42 Sure. I think we have some more work to do in terms of validating the TTS and that's a goal moving forward. But it's a great starting place. If you have a client who wants to work on texting, it only takes a few minutes to give the script and then score their responses and gives us a snapshot of how effectively they're able to communicate through text. But in terms of developing intervention, to support texting, that's really where we're headed with this. I mean, the big drive is to not just study how people are texting, but really to help support them and texting more effectively and using texting to connect socially and improve their quality of life. But with any kind of intervention, we need a really good outcome measure to capture potential changes. Another reason I'm motivated to continue to work on the TTS, if people with aphasia are going to benefit from a treatment, we need rigorous tools to capture that change and document that potential change. 38:50 Ellen Bernstein-Ellis Absolutely. Absolutely. Jaime Lee  38:53 At the same time, I'd say the TTS isn't the only method we are focused on, we're really interested in understanding what unfolds during texting interactions. What's happening in these interactions. So, most recently, I've been working with my amazing collaborator, Jamie Azios, who is an expert in Conversation Analysis. I've been working with Jamie to say, “Hey, what's happening here? Can we use CA to explore what's going on?”  Ellen Bernstein-Ellis  39:25 Well, Jamie, you probably heard this before, but Conversation Analysis can sometimes feel daunting for clinicians to use within their daily treatment settings. In fact, we've had several podcasts that have addressed this and have asked this question. What are you finding? Jaime Lee  39:40 I can definitely relate because I am still very new to CA and learning all the terminology. But Jamie and Laura and I are actually working on paper right now, a CAC special issue, because we presented some data at the Clinical Aphasiology Conference and then will have this paper. We'll be submitting to a JSHL on how we're applying CA to texting interactions. That goal is really based around understanding how people with aphasia and their partners are communicating via texting and looking at these naturalistic conversations to see what barriers they're coming across, and what strategies they are using to communicate in this modality. Ellen Bernstein-Ellis  40:27 That makes a lot of sense. And it really circles back again to communication partner training. That does not surprise me. Jaime Lee  40:33 We're seeing some really interesting, creative, and strategic behaviors used both by people with aphasia and their partners. We're seeing people link to a website, or instead of writing out the name of a restaurant, you know, “meet me here” with a link, or using an emoji to help convey their stance when they can't meet up with a friend. They might have more of an agrammatic production. But that emoji helps show the emotion and we're seeing a lot of people with more severe aphasia using photographs really strategically. Ellen Bernstein-Ellis  41:09 So those are the strategies are helping and I'm sure that CA also looks at some of the barriers or breakdowns, right?  Jaime Lee  41:15 Yes, we're seeing some breakdowns, trouble sources in the CA lingo. In some instances, we see the partner clarify, send a question mark, like, “I don't know what you're saying”. And that allows the person with aphasia, a chance to self-repair, like, “Oops, here, this is what I meant.” And that's really useful. We also have seen some examples of breakdowns that may not get repaired. And we don't know exactly what was happening. In those instances, I suspect there were some cases where maybe the partner picked up the phone and called the person with aphasia, or they had a conversation to work out the breakdown. But we really don't know because we're using these data that were previously collected. So a lot of this does seem to be pointing towards training the partners to provide supports, and also helping people with aphasia be more aware of some of the nonlinguistic tools, and some of the shortcuts that are available, but there's still a lot to learn. Ellen Bernstein-Ellis  42:22 Well, Jamie, as you continue to explore this work, I know you're involved in a special project that you do with your senior undergrads at your university program at James Madison. Do you want to describe the student text buddy program? It sounds really engaging. Jaime Lee  42:38 Sure. This is a program I started here at JMU. JMU has a really big focus on engaging undergrads and research experiences. And we have students who are always asking for opportunities to engage with people with aphasia. Particularly during COVID, there weren't these opportunities. It just wasn't safe. But I know some of the participants from the T-write study and some people with aphasia in our community here in Harrisonburg, were looking for ways to be involved and continue to maybe practice their texting in a non-threatening situation. So this was a project and I was actually inspired by one of the students in my lab, Lindsay LeTellier. She's getting her master's degree now at the University of New Hampshire. But Lindsay had listened to an interview with one of our participants where she said she wanted a pen pal. And Lindsay said, “Oh, this participant says she wants a pen pal, I'd love to volunteer, I'll be her pen pal.” And I said, “Lindsay, that's great. I love the idea of a pen, pal. But if we're going to do it, let's make it a research project. And let's open it up and go bigger with this.” So Lindsey helped spearhead this program where we paired students with people with aphasia to have a texting pen pal relationship for four weeks. And in order to be able to kind of watch their texts unfold, we gave them a Google Voice number, so that we can watch the texts.  We've really seen some really interesting things. We've only run about 10 pairs, but all of the feedback has been really positive from the people with aphasia, they felt like it was a good experience. And the students said it was a tremendous learning experience.  We're seeing some interesting things. Using CA, Jamie and I presented this at IARC, sharing what the students/person with aphasia pairs are doing that's resulting in some really natural topic developments and really natural relationship development. Ellen Bernstein-Ellis  44:39 Nice! What a great experience, and we'll look forward to hearing more about that. Jamie, I can't believe how this episode has flown by. But I'm going to ask you a last question. What are you excited about in terms of your next steps for studying texting? Jaime Lee  44:57 I think we definitely want to continue the Text Buddy project because it's such a great learning experience for students, so we'll be continuing to do that. Jamie and I have applied for funding to continue to study texting interactions and use mixed methods, which is a pairing of both of our areas of expertise. I think there's just more to learn, and we're excited to eventually be able to identify some texting supports to help people with aphasia use texting to connect and be more effective in their communication.   Ellen Bernstein-Ellis  45:35 Well, Jamie, this work is going to be really impactful on the daily lives and the daily ability for people with aphasia to have another mode of support for communicating. So thank you for this exciting work. And congratulations again on your Tavistock award, and I just am grateful that you are our guest for this podcast today. Thank you. Jaime Lee  45:58 Thank you so much, Ellen. This has been great, thanks. Ellen Bernstein-Ellis  46:01 It's been it's been a pleasure and an honor.  So for our listeners, for more information on Aphasia Access and to access our growing body of materials, go to www.aphasiaaccess.org. And if you have an idea for a future podcast series topic, just email us at info@aphasia access.org. And thanks again for your ongoing support of aphasia access. References and Resources  Babbitt, E. M., Heinemann, A. W., Semik, P., & Cherney, L. R. (2011). Psychometric properties of the communication confidence rating scale for aphasia (CCRSA): Phase 2. Aphasiology, 25(6-7), 727-735. Babbitt, E. M., & Cherney, L. R. (2010). Communication confidence in persons with aphasia. Topics in Stroke Rehabilitation, 17(3), 214-223. Bernstein-Ellis, E. (Host). (2021, July 29). Promoting Conversation and Positive Communication Culture: In conversation with Marion Leaman (No. 73) [Audio podcast episode] In Aphasia Access Aphasia Conversations. Resonate. https://aphasiaaccess.libsyn.com/episode-73-conversation-and-promoting-positive-communication-culture-in-conversation-with-marion-leaman Brown, G., & Yule, G. (1983). Discourse analysis. Cambridge. University Press. https://doi.org/10.1017/CBO9780511805226 Fein, M., Bayley, C., Rising, K., & Beeson, P. M. (2020). A structured approach to train text messaging in an individual with aphasia. Aphasiology, 34(1), 102-118. Kagan, A., Simmons‐Mackie, N., Rowland, A., Huijbregts, M., Shumway, E., McEwen, S., ... & Sharp, S. (2008). Counting what counts: A framework for capturing real‐life outcomes of aphasia intervention. Aphasiology, 22(3), 258-280. Kagan, A., Winckel, J., Black, S., Felson Duchan, J., Simmons-Mackie, N., & Square, P. (2004). A set of observational measures for rating support and participation in conversation between adults with aphasia and their conversation partners. Topics in Stroke Rehabilitation, 11(1), 67-83. Kinsey, L. E., Lee, J. B., Larkin, E. M., & Cherney, L. R. (2022). Texting behaviors of individuals with chronic aphasia: A descriptive study. American Journal of Speech-Language Pathology, 31(1), 99-112. Leaman, M. C., & Edmonds, L. A. (2021). Assessing language in unstructured conversation in people with aphasia: Methods, psychometric integrity, normative data, and comparison to a structured narrative task. Journal of Speech, Language, and Hearing Research, 64(11), 4344-4365. Lee, J. B., & Cherney, L. R. (2022). Transactional Success in the Texting of Individuals With Aphasia. American Journal of Speech-Language Pathology, 1-18. Meredith, J. (2019). Conversation analysis and online interaction. Research on Language and Social Interaction, 52(3), 241-256. Ramsberger, G., & Rende, B. (2002). Measuring transactional success in the conversation of people with aphasia. Aphasiology, 16(3), 337–353. https://doi.org/10.1080/02687040143000636 Todis, B., Sohlberg, M. M., Hood, D., & Fickas, S. (2005). Making electronic mail accessible: Perspectives of people with acquired cognitive impairments, caregivers and professionals. Brain Injury, 19(6), 389-401. Link to Jaime Lee's University Profile: https://csd.jmu.edu/people/lee.html  mu.edu/people/lee.html 

The NeuroNerds
Joe's 6-Year Stroke-iversary: It's Getting Better

The NeuroNerds

Play Episode Listen Later Aug 11, 2022 61:10 Transcription Available


All episodes are available at https://TheNeuroNerds.com. Follow @TheNeuroNerds on Twitter/Instagram and Like us at Facebook.com/TheNeuroNerds.SummaryIt's Joe's 6th stroke-iversary. On August 4, 2016, he suffered a major hemorrhagic stroke that changed his life forever. In this episode, Joe processes the anniversary of his stroke with his friend Mackenzie Lea, a chronic neuro illness survivor suffering from trigeminal neuralgia. After 6 years, Joe is realizing that every year feels different post-stroke. He talks with Mackenzie about how much connecting with other survivors, helps both of them cope with their deficits emotionally and physically. They also talk about Joe's vision moving forward and how he plans to support the brain injury survivor community even more deeply through his coaching programs and free resources including virtual support groups and events. What kind of virtual events do you want us to create for our community? We want to support YOU! So let us know what you need to support you through brain injury recovery. Let us know by tweeting @theneuronerds on Twitter.Links MentionedJoin our free virtual events and workshops - https://bit.ly/3BTS6BJFollow Mackenzie on Instagram - https://instagram.com/macdaddytheladyfaceCreditsNew to our show? Take our episode tour to get started! https://newsletter.theneuronerds.com/tourFind tools for recovery in Joe's FREE guide, 9 Must-Have Tools for Stroke & Brain Injury Recovery! This guide includes some essential tools for your recovery journey including tips for occupational and physical therapy, mindset, overstimulation, and more. Get your copy here → https://www.yousorock.coach/guideIf you're a brain injury survivor who would like to learn how to shift your mindset, create a routine, and get more support during recovery, book a call with Joe at https://newsletter.yousorock.coach/checkin-callSupport The NeuroNerds podcast on Patreon and join our NeuroJedi High Council at www.Patreon.com/TheNeuroNerdsCheck out The NeuroNerds Amazon Shop at amazon.com/shop/theneuronerdsPlus get a free Audible trial at http://www.audibletrial.com/theneuronerds!Co-hosted by Joe Borges and Lauren ManzanoFind Joe at http://joesorocks.com and @joesorocks on Twitter/InstagramSubmit your stroke/brain injury recovery story at https://www.joesorocks.com/submit-your-storyFind Lauren at @laurenlmanzano on Instagram, @tankbbg on TwitterProduced by Joe Borges and Felice LaZae, http://felicelazae.com, @felicelazae on Twitter/InstagramEdited by Marcellus Wesley - https://www.soundsignature.productionsSponsored by Motus Nova, Avid Technology, and our Patreon Supporters

Aphasia Access Conversations
Episode #88: Everyone's an Expert: Person-Centeredness in the Clinic and Research -- A Conversation with Jackie Hinckley

Aphasia Access Conversations

Play Episode Listen Later Aug 9, 2022 35:21


During this episode, Dr. Katie Strong, Associate Professor in the Department of Communication Sciences and Disorders and Director of the Strong Story Lab at Central Michigan University talks with Dr. Jackie Hinckley from Nova Southeastern University about stakeholder engaged research and Project BRIDGE.   Dr. Jackie Hinckley is Professor and Director of the Undergraduate Program at Nova Southeastern University. She is Board Certified in Neurogenic Communication Disorders by the Academy of Neurologic Communication Disorders and Sciences (ANCDS) and Fellow in Person-Centered Care. Dr. Hinckley is currently a Board Member of Aphasia Access and the National Aphasia Association. She is Executive Director Emeritus of Voices of Hope for Aphasia. She is Project Lead for Project BRIDGE, formerly funded by two PCORI Engagement Awards and now supported by NSU. She is the author of two books, Narrative-Based Practice in Speech-Language Pathology, and What Is It Like to Have a Communication Impairment?  Simulations for Family, Friends, and Caregivers. She is an Editor for The Qualitative Report, and on the Editorial Board of Topics in Stroke Rehabilitation and Journal of Interactional Research in Communication Disorders.        In this episode you will:  Learn about the importance of including people with aphasia and clinicians in the research process to make the research better. Find out what stakeholder engaged research is and its importance in developing relevant evidence for clinical practice Hear how Project BRIDGE has enhanced stakeholder engagement in research related to aphasia. Be empowered to embrace your own expertise and the expertise of your clients and their family members. KS: Jackie, Welcome back to the Aphasia Access Conversations Podcast. I believe you were first interviewed on our podcast in 2016 – Episode #2! We now have over 86 episodes that are available! Who knew the series would have such staying power. It's really amazing! Thanks for joining me today. I'm really excited about this conversation with you and having our listeners hear about what you've been up to lately and how that is impacting our clinical practice and the people with aphasia that we work with. JH: Well, thank you, Katie, for the introduction, and thank you to you and Aphasia Access for the opportunity to be on this podcast. I'm really excited to talk about these issues and talk about them with you. KS: Well, let's dig in. So, today's topic is “everyone's an expert”. How does that relate to our clinical work and our research?  JH: Well, you know, Carl Rogers, the famous psychologist said that we are the best experts on ourselves. And I think that we all have that thought in our minds, but it really hits at the core of person-centeredness. An expert is someone with authoritative knowledge. So that has two parts, the authority and the knowledge. And an expert comes about when people agree that an individual has high performance or high knowledge in an area. I think that the idea of person-centered care in our clinical work is that we acknowledge that our clients are the best experts on themselves. And I think most of us who are practicing speech pathologists would certainly acknowledge that and agree with that. But in reality, in a normal clinical process, it's actually kind of hard to do. Because the clinician is, by definition, an expert, and has a certain degree of authority in the clinical interaction. So, for example, clinicians need to do an assessment and a diagnosis. And the client really can't self-diagnose, so there's an issue of authority and knowledge from the point of view of the clinician. But now that authority tends to seep into other areas like goal setting, where really the client needs to bring forward their own expertise about themselves. When we continue to exercise authority over what the goal should be,  and yet, evidence shows that collaborative goal setting like goal attainment scaling significantly improves not just the immediate outcomes of therapy, but also how active the client is after they are discharged home. So, there's a tension around expertise. It has to shift back and forth during the clinical process. And a lot of times, it starts with the clinician having a lot of authority, but we have to know how to give our client that authority about themselves. So, it's only in the last decade or so that the idea of who's an expert and person-centeredness really has been applied to research.  For example, if we think about a traditional research process, the researcher reads the literature and identifies the knowledge gap comes up with the experiment or whatever study that can contribute to that gap. And the researcher determines the design, the method, the measurement, does the research, publishes it and gets it out in a way that the researcher basically is crossing their fingers is going to have the impact that they hoped for. The problem is that it this ignores who is going to be affected by the research. So, aphasia in, our specialty in our world here, is, is always existing in persons. It's not something that we can be that we can study in a petri dish. So anytime we do research that has to do with aphasia, we need to be acutely aware that we're creating knowledge that is going to actually affect somebody's life. And so maybe this knowledge is going to affect how the aphasia is assessed or treated, or what we do to support people with aphasia, but whatever it is, it's the lives of people with aphasia that are being affected by this research.  So, you know, let's step back a minute. And let's say I invented some new kitchen gadget, or a shoe or something, right. So. I'm the researcher of this new gadget. If I want to be successful in selling the product and having the product being used, I would have incorporated the views of people who might use it by trying out the products way before I ever try manufacturing and selling it because I need that feedback. I need to know if there are potential customers out there and whether they're actually going to use it.  And the same thing really applies to research. So, if I'm a researcher and I create a new research product (a.k.a = knowledge, or study to create knowledge). If I create some research product, but I'm not an expert user of that knowledge, in other words I'm a researcher who doesn't do assessments every day or treatment every day, then I run the very great risk that I'm creating a product that can't quite be used by the people was originally intended for. If we really embraced person-centeredness in research, then we would start by thinking about who are the people who are going to end up being affected by this research product or this research outcome. And we would incorporate people living with aphasia, and also clinicians into our research, and that would make the research better. KS: Powerful stuff! I remember the Disability Rights initiative using a slogan, “Nothing about us without us.” JH: Yes, that is a great slogan that has been around for a while. And that definitely reflects the idea of person-centeredness. And I think we need to remember that slogan and everything we do, whether it's our clinical practice, but also in our research. And that's a little bit of a new way of thinking about research. So, research is not just about the people with aphasia, sometimes it is, but a lot of times it's also about what are the best practices in clinical activities. So, we need to include both people with aphasia, their families, clinicians, maybe policymakers, other people who are really the stakeholders who are affected by the research products that we make, and they need to be involved in planning and doing the research and saying what kind of research would be most helpful. KS: I'm thinking a lot about researchers out there, Jackie, you and I included. We have clinical experience. So maybe they have a good idea of what clinicians need to know from research.  JH: You know, I have heard this from some people saying, “Well, I've been a clinician, so I know.” And maybe that's true. I think that people like you and I, who have been spent a good amount of time being clinicians in our past, probably are ahead of the game. In a sense, we might have a better sense of what we don't know, right? Because we've been out there doing it. But I will, in my opinion, I think researchers who aren't actively out in clinical settings, and they mostly aren't, still aren't quite totally up to date with the current challenges that are being faced by people. Anthony Bourdain, the celebrity chef said, “Just because I like sushi doesn't mean I can make sushi.” So, I think we may think that…but if we're not right in the thick of it, we may not know as much as we think. And we need to bring in the experts who actually do know what it's like to do that daily clinical work. KS: Point well taken. This leads us to the idea of stakeholder-engaged research. What is it? JH: The term stakeholder engaged research is an umbrella term. It covers a lot of different approaches to the idea of bringing in individuals who are going to be affected by the research to actually help can plan, conduct, and disseminate the research. So, there are various ways that stakeholders can be involved in research. They could be consultants, or they could be co-researchers, and full collaborators. In the case of a co-researcher, they help come up with research questions, help design the research, pick the outcome measure, help with data analysis, or interpretation, and even contribute to dissemination of the research results. We have found that people, family members, clinicians, other stakeholders, and people with aphasia can participate it fully as collaborators in all of these things if they so choose. KS: Amazing. I know there are a few examples of this kind of research in Ireland. For example, Ruth McMenamin …. and also, in Denmark Jytte Isaksen is doing interesting work, and of course there is Ciara Shiggins in Australia….what about in the US? JH: Yeah, so in other places, like in Europe, as you say, in Australia, I, you know, I think they've been a little ahead of the United States in terms of understanding that they need to bring in the people who are affected by research into the actual conducting of research. And that also brings up the point that I said, stakeholder engaged research is an umbrella term. There are many different terms and in some other countries, they also use different terms for this. But I'm using stakeholder engaged research here, because as you point out, it really is the term that's coming to the forefront here in the United States. So, in the United States, and in our all of our ASHA journals, we unfortunately have very few examples of stakeholder engaged research, where clients and family members are fully engaged collaborators are involved. There's only a handful of studies. So, it hasn't been a widely used approach in our field yet, but I think it's growing quickly. KS: What makes you think it will grow quickly? JH: There are three broad reasons why I think this is changing fast. First, I think the idea that people who are being affected by something – whether it be a policy, regulation, legislation – is taking a broader hold in certain areas of our lives. For example, in academics where we have student-centered learning. Second, research funding agencies in the United States are starting to value, and therefore reward with funding, research projects in which stakeholders play an important role and make a substantial contribution to the research project. The most important landmark in terms of funding agencies in the United States is the creation of the Patient-Centered Outcomes Research Institute, called PCORI. It was created as part of the Affordable Care Act in 2010 and it was charged with funding comparative effectiveness research – in other words, research that would help patients and clinicians what is the best treatment for them. Their slogan is “Research Done Differently”, and I think that captures that the research they are producing is not at all the kind of traditional research that we mentioned earlier. PCORI is funding all kinds of health research across many disciplines in innovative ways. This is really changing the landscape of research and research funding, because other funding agencies are starting to follow their lead. The third reason why I think stakeholder-engaged research will grow quickly in our field is the experience we've had with Project BRIDGE. KS: I've been a Regional Coordinator and also a member of a few research teams for Project BRIDGE. Honestly, it's been a gamechanger for me in how I think about approaching research. Can you tell us about how Project BRIDGE got started? JH: Sure. So, 10 years ago, I was at a conference called the Clinical Aphasiology Conference. And for anyone who's not familiar with that conference, until the last couple of years, the only people who could attend the conference were people who submitted presentations. So, this means the conference in that sense rather exclusive, and that the audience, the people who are present at the conference, were really only researchers. So, 10 years ago, I was at this conference, listening to three days of presentations, all about aphasia treatment and I suddenly realized that we're all researchers talking to other researchers about aphasia treatment, but no one at the conference was either using the treatment as a clinician or receiving the treatment as a client. So, I said to some of the folks at the meeting, “There should be some people with aphasia at this conference. We're talking about their treatment.” And the response I got 10 years ago was, “Well, they don't really belong here.” The timing of that was one year after PCORI, became really active and started funding initiatives.  Around the same time, we had done a project with the Sarasota Aphasia Community Group, which is a fabulous group, if anyone needs a referral in that area. They run themselves. The group is really great. We asked their members to come up with ideas about what research they think would be important. We talked to them about research, and we set them off. So, they were off on their own and we did not interfere with this. They had their own group meetings and came up with the research ideas. So, they came up with 22 ideas.  Now most of their research, and by the way, these were really good questions. And most of them, you know, were formulated pretty close to how we would normally formulate research questions. I mean, they did a fabulous job with very little information about research. Most of their research questions were about the best treatment for different kinds of language issues. For example, “What's the best treatment for being able to produce sentences?” But then they came up with some really special questions that I don't think that you or I even despite all of our clinical experience, and our research experience, I'm not sure we would come up with these questions.  For example, they wanted to know, “How can the speech pathologist engage the person with aphasia, not just do rote exercises, but rather connect with the aphasic as a personality, tailor the therapy to the individual needs?” KS: Wow, that's mind blowing. And that's 10 years ago, right?  JH: Yeah, yeah, maybe even more than that. And by the way, I said aphasic. I'm reading what they wrote, so I just wanted to let everyone know that those are their words. Another question they came up with was, “What is the effect on the person with aphasia if they do not like their speech pathologist? or ‘The speech pathologist doesn't understand the patient's needs or doesn't customize the therapy towards them?'” Wow. I think as clinicians, we probably know, in our hearts that when we don't have a good match in terms the rapport between the clinician and client, it probably doesn't go that well. It's not the best outcome. We all know this. But we don't know very much about it from a research point of view. And then another question they came up with was “What makes a speech pathologist excellent?” These are from their point of view. It was just people with aphasia and family members coming up with these questions. KS: Wow, well I'm certain that I wouldn't be able to come up with those types of questions. They are so meaningful and important. They really get right down to what's important, don't they? JH: Yeah. I'm really pleased that we were able to publish that paper with the founders of the Sarasota Aphasia Community Group. They were co-authors. They were equal collaborators with us in the project. That was published in 2014.  And then two years later, in 2016, we submitted a proposal to PCORI, when I was the Executive Director of Voices of Hope for Aphasia. And although that first proposal was not funded, we got great feedback. When I read the feedback, I thought, you know, if we make this actually a little bit bigger, maybe it's going to be successful, which is not always the way you go. But we partnered with the University of South Florida. So, it was Voices of Hope for Aphasia and University of South Florida. And that was funded, and that proposal created Project BRIDGE.  The first two years of funding allowed us to create a working conference. The goal was to bring together people with aphasia, family members, clinicians, and researchers to form collaborative research teams. One challenge with this kind of work and you know, it's this is not just in the world of aphasia, this is any health domain that uses this kind of stakeholder engaged research. So, one challenge is that researchers know about how to do research but other people who aren't researchers don't know so much about research. On the other hand, researchers are not experts on daily clinical processes, nor are they experts on living with aphasia. So, we created some video trainings, and some of them were for people with aphasia and family members to learn more about the research process, and some were for researchers about communication supports role dynamics, and plain language. Because, you know, most researchers have never been trained in doing this kind of collaborative research. So that conference was held in October 2018. And after a two-day meeting, 11 research teams were formed. And you were there, Katie. KS: Yes! Project BRIDGE was a career changing experience for me. I had invited two of our Lansing Area Aphasia Support Group members, Chris and Ruby, to join me, and we flew down to Florida together. I think from that beginning of travelling together to a conference set a stage for something different. Actually, Chris's sister, who lived in Florida joined us at the conference too. None of us really knew what to expect, but from the very beginning, we all knew this was different. At the conference, I remember just having my mind blown that there were over 100 people attending the conference- many who had aphasia or were family members whose lives were impacted by aphasia. One of my favorite parts was when we were in our teams, I had a team about storytelling and aphasia, and everyone was brainstorming on research questions. The training, the collaboration, the energy, it was really impactful. I'd love for you to tell our listeners more about Project BRIDGE. JH: So, after that conference, we were very happy that these research teams were formed and there was so much energy. And I want to say that, you know, from the very beginning, before we even got funding, we had an advisory team that was made up of people with aphasia, families, clinicians, and researchers. And so, after the conference and a little bit of follow up with our teams. The whole advisory team was so excited, and we there was so much momentum, and we knew we wanted to keep Project BRIDGE going.  So, we applied for a second round of funding from PCORI. And with the second round of funding, we created what we call a research incubator. And we were able to create four regional centers around the United States because we knew there are many people who wanted to participate, but who cannot travel across country to a conference. So, we started Project BRIDGE as a research incubator in January 2020. Our mission was to train 48 people with aphasia, family members, clinicians, and researchers on stakeholder engaged research and get them connected to a collaborative multistakeholder research team. Katie, you are one of the regional coordinators in Michigan yourself for the Midwest, so you know how busy we got! KS: Oh yes, busy is an understatement. Suma Devanga from Western Michigan University and I were the Midwest Bridge Regional Coordinators. We had so much interest we just kept meeting with various stakeholders, holding trainings, connecting people with research teams. Definitely Project BRIDGE was the place to be!  JH: All the regional centers were very busy. At the end of two years, we had three times as many people sign up to participate than we planned, and we trained 25% more people than we planned. Many more stakeholder-engaged research teams have been formed, and they're studying topics like the effects of yoga on aphasia. The yoga team actually started in the original 2018 conference. And, you know, check it out, maybe we can share some links to a couple of their publications, because it's a very productive team. KS: Absolutely , we'll put we'll put the links to that and some of the other things you've mentioned in the show notes.  JH: Great. Another team that has been influenced by Project BRIDGE is aphasia games for health. There's more than one team now working on mental health interventions for people with aphasia. We also have a couple of teams working on different aspects of friendship and aphasia. One team is a collaborative team working on how to run aphasia groups. I mean, isn't that great? Get the people with aphasia to run a study on the best way to run the aphasia groups, right? It makes total sense.  We've got lots of teams working, and we've had several different presentations at various conferences. And, you know, please stay tuned in the coming months and, and years, because more and more the work will get to a point where it'll be out in different publications.  When I look back at the work that we did with the Sarasota Aphasia Group, and the questions that they came up with, I'm so overjoyed that many more of them are now being addressed because people with aphasia, care partners, clinicians are being involved in not just coming up with the questions but planning and actually doing the research. KS: Powerful stuff! This is all very exciting. But there must be some challenges…  JH: Definitely, there's definitely challenges. First of all, you know, most researchers who are active today have not been trained in this kind of research. They were not trained in their doctoral program, to sit down with people who have expertise in a completely different area. They may have been trained to collaborate with people who are more or less like them. But that is a very different game. So, one thing that I think we'd like to do in the future is help foster the incorporation of the skills needed to do this kind of research into doctoral training programs. When we talk to researchers who have gotten into this, like you. We find that this is a recommendation that many people come up with. Another challenge of this kind of work is that it takes more time. It is time consuming. It takes time to involve people who come from a different background. And it doesn't matter if they are people with aphasia, a community partner, whoever they are, when they have a different background, then an academic researcher, that's going to take more time, and it's really, truly an investment. That is an issue for this kind of work. Another challenge or risk is as there are more incentives for in involving stakeholders of different types into the research process, there's always a risk of tokenism. So, if that starts becoming rewarded in some way, like through funding, then there's a risk that, you know, stakeholders are up serving on advisory boards, so it looks like they're involved, but they're not really, truly collaborators or really involved. So that is a risk I think that we're going to run, especially in the future.  But you know, honestly, I think that's a risk that we run in our clinical work, too. Sometimes we don't mean to be to be tokenistic. But I think when we ask our clients a general question, like, “What would you like to work on in therapy?” You know, our heart is there, we want to involve the client. But that's a question that the client is not really prepared to answer in that form. Most of our clients, probably, they never been in therapy, they don't know what therapy is in the first place. They don't even know how to start thinking about that question. If we don't take extra steps to seek out their perspective, and what's important to them, that that's a little bit tokenism too. You know, we don't mean it to be, but it really kind of is, I think. We need to ask specific questions; we need to use tools that we have. For example, Aphasia Access now has the Life Interests and Values cards, which is a fabulous way of getting the idea of clients' priorities for therapy, in an aphasia friendly way. I think the other thing for clinicians for our clinical work is when we do ask questions of our clients, and they give us the answer, I think we have to do a better job at taking them at their word. Because I think sometimes, if the answer is not quite what we think it should be, or we're a little surprised by the answer, we're very likely to attribute insight, problem solving issues, motivation, issues, whatever it is, into that client's response, when perhaps, that that is their answer for them. And you know, they are the experts on themselves.   KS: Yes, that's such great perspective and food for thought. I think we really need to listen and embrace what our clients put forth with ideas for how to work on goal areas and be open to receiving the goals and the ideas that they that they have. Even if it takes us a little off road from where we typically go. How can we help them explore and develop and operationalize their ideas? And I think it is challenging, it's new territory for us as clinicians and research but I think once we're open to this, I mean, honestly, sky's the limit. And the cool thing is that we as researchers get to learn and grow alongside our clients as well. Jackie, this has been such a thoughtful and great conversation. The time has just flown by. But as we wrap up today, do you have any final thoughts? JH: Well, you know, a lot of times we hear people say, “I'm no expert”, and Project BRIDGE has really taught me and showed all of us involved I think that a few things. Clinicians might not feel like experts around researchers, but they are experts about what they do and the clinical process. People with aphasia and care partners probably don't feel they don't feel like experts around researchers or clinicians, but in point of fact they are experts about themselves and their own lives and, and what's important, and what we can best do to fit into those priorities. So, I think that we've learned from Project BRIDGE that a researcher or a clinician who exudes cultural humility. You know, we might not feel like experts in front of clinicians or people with aphasia and care partners. So, I think we need to acknowledge, we're all experts on ourselves and our little corner of the world, what we do all day, and other people are experts on other things. And hopefully, we don't impose that onto other people and that we can just collaborate with each other.  When some kind of research is going on, that might potentially affect something that a clinician routinely does, or how a person with aphasia is living, or the kind of therapy they're going to get, etc. We need to be willing to step up and contribute to a collaborative team. You know, probably not every kind of research in the world is a perfect fit for this kind of stakeholder engaged research. But a lot of what we do in aphasia, I think, and especially things that are important to members of Aphasia Access, would be better, more effective and more efficiently done with a collaborative team. We need everyone's expertise to change things for the better. When we do this kind of collaborative research, it speeds up how fast the research gets used in practice settings. So, it benefits people faster, because it's more effective. So, we need people to be aware of this and get involved. Project BRIDGE, fortunately, is now supported by Nova Southeastern University. So, it's not going away just because the funding ended in this year. And we are continuing to help people, whether they be researchers, clinicians, people with communication disabilities, or family members to get going on stakeholder engaged research. We still have our video trainings, And, coming soon, we'll be offering customized research team trainings. I invite everyone to please check out our website, www.projectbridge.online  You can sign up for our newsletter and we post various resources that are helpful tools. KS: Thanks, Jackie. I'll be sure to put all of your contact information and Project BRIDGE as well as some articles on stakeholder engaged research in the show notes. Thank you, Jackie. you've given us lots of food for thought and inspiration for action during the conversation. But I also just want to say, thank you for your forward thinking and helping us in the world of aphasia get on this stakeholder engaged research train. Project BRIDGE is a great conduit for who knows what's to come. JH: Well, thank you, Katie. And, and thanks again, for this opportunity to talk about this effort. You know, there's so many people around the United States who are participating in this, I could have spent the whole podcast just probably listing their names, but that might not be too engaging. KS: It's a big posse, Project BRIDGE! JH: It's very big. Broadly, I definitely want to acknowledge them, even though I can't acknowledge everyone by name. Everyone's doing such exciting work and people are finding their own paths through this, which is what we need. I didn't say it earlier, but the idea of incorporating people living with communication disabilities into the research really springs out of my own personal experience with disability and in life. And it's such a privilege for me to meld my personal experience into things that hopefully will help others too. So, thank you very much. On behalf of Aphasia Access, we thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org If you have an idea for a future podcast topic email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.   Resources Referenced in Episode Project BRIDGE www.projectbridge.online  Email: flaaphasia@gmail.com Twitter @ProjectBridge3 Facebook @bridgeresearch  Instagram @projectbridge2  Dr. Jackie Hinckley - Jh988@nova.edu   PCORI Engagement Resources: https://www.pcori.org/engagement/engagement-resources  Project BRIDGE (and resources) on PCORI: https://www.pcori.org/research-results/2020/building-bigger-bridge-research-incubator-network-pcor-communication-disabilities  Project BRIDGE Published Abstract: https://www.frontiersin.org/10.3389/conf.fnhum.2019.01.00030/event_abstract    Examples of Stakeholder Engaged Research Project with Sarasota Aphasia Community Group:  https://www.tandfonline.com/doi/full/10.3109/09638288.2013.829528  Team Yoga - 1: https://pubs.asha.org/doi/10.1044/2020_PERSP-20-00028  Team Yoga  - 2: https://pubmed.ncbi.nlm.nih.gov/34797684/  Aphasia Games for Health: https://www.aphasiagamesforhealth.com/    Canadian Institutes of Health Research Patient Engagement in Research Resources https://cihr-irsc.gc.ca/e/51916.html  Ethics in Patient Involvement: Hersh, Israel, & Shiggins 2021 https://www.tandfonline.com/doi/full/10.1080/02687038.2021.1896870    Goal Setting Resources for Aphasia Live Interests Values Cards (LIV! Cards) https://www.aphasiaaccess.org/livcards/ 

The NeuroNerds
Baking and Brain Injury Recovery with Cynthia Dyke

The NeuroNerds

Play Episode Listen Later Aug 3, 2022 56:21 Transcription Available


All episodes are available at https://TheNeuroNerds.com. Follow @TheNeuroNerds on Twitter/Instagram and Like us at Facebook.com/TheNeuroNerds.SummaryHaving a positive attitude post-brain injury is key to recovery. In this episode Joe is chatting with a Cynthia Dyke, a TBI survivor with infectious positivity. They talk about the importance of wearing seatbelts to prevent brain injury in an accident and dealing with bad bedside man from doctors. They also touch on connecting with the community and the gift of a second chance to live life to the fullest after brain injury. How do you live life to the fullest and appreciate each day? Share with us on by tagging @theneuronerds on TwitterLinks MentionedFollow Cynthia on Instagram - https://www.instagram.com/cynthia0rawr/Follow Cynthia's baking on Instagram - https://www.instagram.com/sunshine_cakes.baking/ CreditsNew to our show? Take our episode tour to get started! https://newsletter.theneuronerds.com/tourFind tools for recovery in Joe's FREE guide, 9 Must-Have Tools for Stroke & Brain Injury Recovery! This guide includes some essential tools for your recovery journey including tips for occupational and physical therapy, mindset, overstimulation, and more. Get your copy here → https://www.yousorock.coach/guideIf you're a brain injury survivor who would like to learn how to shift your mindset, create a routine, and get more support during recovery, book a call with Joe at https://newsletter.yousorock.coach/checkin-callSupport The NeuroNerds podcast on Patreon and join our NeuroJedi High Council at www.Patreon.com/TheNeuroNerdsCheck out The NeuroNerds Amazon Shop at amazon.com/shop/theneuronerdsPlus get a free Audible trial at http://www.audibletrial.com/theneuronerds!Co-hosted by Joe Borges and Lauren ManzanoFind Joe at http://joesorocks.com and @joesorocks on Twitter/InstagramSubmit your stroke/brain injury recovery story at https://www.joesorocks.com/submit-your-storyFind Lauren at @laurenlmanzano on Instagram, @tankbbg on TwitterProduced by Joe Borges and Felice LaZae, http://felicelazae.com, @felicelazae on Twitter/InstagramEdited by Marcellus Wesley - https://www.soundsignature.productionsSponsored by Motus Nova, Avid Technology, and our Patreon Supporters

The NeuroNerds
Wear A Helmet & Prevent TBIs with Christa Moritz

The NeuroNerds

Play Episode Listen Later Jul 26, 2022 53:36 Transcription Available


All episodes are available at https://TheNeuroNerds.com. Follow @TheNeuroNerds on Twitter/Instagram and Like us at Facebook.com/TheNeuroNerds.SummaryIn this episode, Joe is chatting with TBI survivor Christa Moritz. She shares her experience of sustaining a traumatic brain injury from a bicycle accident. They talk about the importance of protecting the brain from trauma by taking safety measures like wearing a helmet while riding a bike. Plus, Christa is a dancer so she loves everything about expressing herself through body movement so she shares how she is structuring her recovery goals around her love of self-expression through dance.Links MentionedFollow Christa on Instagram - https://instagram.com/thelillewritz CreditsNew to our show? Take our episode tour to get started! https://newsletter.theneuronerds.com/tourIf you're a brain injury survivor who would like to learn how to shift your mindset, create a routine and get more support during recovery, go to http://www.yousorock.coach/Support The NeuroNerds podcast on Patreon and join our NeuroJedi High Council at www.Patreon.com/TheNeuroNerdsCheck out The NeuroNerds Amazon Shop at amazon.com/shop/theneuronerdsPlus get a free Audible trial at http://www.audibletrial.com/theneuronerds!Co-hosted by Joe Borges and Lauren ManzanoFind Joe at http://joesorocks.com and @joesorocks on Twitter/InstagramSubmit your stroke/brain injury recovery story at https://www.joesorocks.com/submit-your-storyFind Lauren at @laurenlmanzano on Instagram, @tankbbg on TwitterProduced by Joe Borges and Felice LaZae, http://felicelazae.com, @felicelazae on Twitter/InstagramEdited by Marcellus Wesley - https://www.soundsignature.productionsSponsored by Motus Nova, Avid Technology, and our Patreon Supporters

The NeuroNerds
Dancing Through Recovery Morena Fornaciari

The NeuroNerds

Play Episode Listen Later Jul 20, 2022 67:10 Transcription Available


All episodes are available at https://TheNeuroNerds.com. Follow @TheNeuroNerds on Twitter/Instagram and Like us at Facebook.com/TheNeuroNerds.SummaryIn this episode, Joe is chatting with Morena Fornaciari, a stroke survivor from Brazil. Morena is all about positivity and they talk about how important it is to keep an optimistic mindset throughout the ups and downs of recovery. She shares her journey of going from learning to walk again to dancing again! Her ability to utilize dance and her love of applying makeup as a means of physical and occupational therapy is a true inspiration. What are some passions you have and use to help with your brain injury recovery? Please share on our socials!Links MentionedFollow Morena on Instagram - https://instagram.com/derepenteavcFollow Morena on Tiktok - https://www.tiktok.com/t/ZTRh7efmoCreditsNew to our show? Take our episode tour to get started! https://newsletter.theneuronerds.com/tourIf you're a brain injury survivor who would like to learn how to shift your mindset, create a routine and get more support during recovery, go to http://www.yousorock.coach/Support The NeuroNerds podcast on Patreon and join our NeuroJedi High Council at www.Patreon.com/TheNeuroNerdsCheck out The NeuroNerds Amazon Shop at amazon.com/shop/theneuronerdsPlus get a free Audible trial at http://www.audibletrial.com/theneuronerds!Co-hosted by Joe Borges and Lauren ManzanoFind Joe at http://joesorocks.com and @joesorocks on Twitter/InstagramSubmit your stroke/brain injury recovery story at https://www.joesorocks.com/submit-your-storyFind Lauren at @laurenlmanzano on Instagram, @tankbbg on TwitterProduced by Joe Borges and Felice LaZae, http://felicelazae.com, @felicelazae on Twitter/InstagramEdited by Marcellus Wesley - https://www.soundsignature.productionsSponsored by Motus Nova, Avid Technology, and our Patreon Supporters

Dialogues on Applied Channel Theory
Episode 35: Post-Stroke Rehabilitation

Dialogues on Applied Channel Theory

Play Episode Listen Later Jul 20, 2022 31:49


In this episode, Jonathan talks to Dr. Meng Xiao Nan from the Huguosi TCM Hospital about his use of Applied Channel Theory in the treatment of post-stroke patients.Music by The Strayun.  If you're interested in listening to the entire song, please visit:  thestrayun.bandcamp.com/track/clancy-of-the-overflow

The NeuroNerds
Joe's Birthday and Stroke-iversary Reflections

The NeuroNerds

Play Episode Listen Later Jul 12, 2022 42:00 Transcription Available


All episodes are available at https://TheNeuroNerds.com. Follow @TheNeuroNerds on Twitter/Instagram and Like us at Facebook.com/TheNeuroNerds.SummaryIt's that time of year for our host Joe - the period between his birthday and stroke-iversary (the anniversary of his stroke). It's been 6 years since he suffered a hemorrhagic stroke and in this special solo episode, Joe is reflecting on what he's learned about living, how he lives each day in gratitude and his hopes and dreams for the future. This episode is for anyone who has gone through a traumatic health crisis like a stroke. There is hope on the other side. If you're a brain injury survivor or have someone in your life who is, please connect with us on our socials. The NeuroNerds are here to help!CreditsNew to our show? Take our episode tour to get started! https://newsletter.theneuronerds.com/tourIf you're a brain injury survivor who would like to learn how to shift your mindset, create a routine and get more support during recovery, go to http://www.yousorock.coach/Support The NeuroNerds podcast on Patreon and join our NeuroJedi High Council at www.Patreon.com/TheNeuroNerdsCheck out The NeuroNerds Amazon Shop at amazon.com/shop/theneuronerdsPlus get a free Audible trial at http://www.audibletrial.com/theneuronerds!Co-hosted by Joe Borges and Lauren ManzanoFind Joe at http://joesorocks.com and @joesorocks on Twitter/InstagramSubmit your stroke/brain injury recovery story at https://www.joesorocks.com/submit-your-storyFind Lauren at @laurenlmanzano on Instagram, @tankbbg on TwitterProduced by Joe Borges and Felice LaZae, http://felicelazae.com, @felicelazae on Twitter/InstagramEdited by Marcellus Wesley - https://www.soundsignature.productionsSponsored by Motus Nova, Avid Technology, and our Patreon Supporters

The NeuroNerds
Stroke Recovery and Creativity with Mimi Hayes

The NeuroNerds

Play Episode Listen Later Jul 5, 2022 31:52 Transcription Available


All episodes are available at https://TheNeuroNerds.com. Follow @TheNeuroNerds on Twitter/Instagram and Like us at Facebook.com/TheNeuroNerds.SummaryThis episode is all about creativity and brain injury recovery. Mimi Hayes is back on the show chatting with Joe about how having comedy as a creative outlet has helped her through her stroke recovery. As she gets ready to head to Scotland for her second appearance at the Edinburgh Festival Fringe, she reminisces about her first experience at Fringe as a brain injury survivor including falling off the stage! Joe and Mimi also chat about building opportunities to connect with other survivors through sharing their stories.Do you have a creative outlet that helps you through brain injury recovery? Please share on our socials!Links MentionedHelp Mimi go to Edinburgh Festival Fringe! Support her Kickstarter here - https://www.kickstarter.com/projects/getmimitofringe/20-nothing-at-fringe-festivalFollow Mimi on IG - https://instagram.com/mimihayesbrainMimi's website - http://mimihayes.comCreditsNew to our show? Take our episode tour to get started! https://newsletter.theneuronerds.com/tourIf you're a brain injury survivor who would like to learn how to shift your mindset, create a routine and get more support during recovery, go to http://www.yousorock.coach/Support The NeuroNerds podcast on Patreon and join our NeuroJedi High Council at www.Patreon.com/TheNeuroNerdsCheck out The NeuroNerds Amazon Shop at amazon.com/shop/theneuronerdsPlus get a free Audible trial at http://www.audibletrial.com/theneuronerds!Co-hosted by Joe Borges and Lauren ManzanoFind Joe at http://joesorocks.com and @joesorocks on Twitter/InstagramSubmit your stroke/brain injury recovery story at https://www.joesorocks.com/submit-your-storyFind Lauren at @laurenlmanzano on Instagram, @tankbbg on TwitterProduced by Joe Borges and Felice LaZae, http://felicelazae.com, @felicelazae on Twitter/InstagramEdited by Marcellus Wesley - https://www.soundsignature.productionsSponsored by Motus Nova, Avid Technology, and our Patreon Supporters

The NeuroNerds
Celebrating Pride with Michael Shutt

The NeuroNerds

Play Episode Listen Later Jun 28, 2022 59:14 Transcription Available


All episodes are available at https://TheNeuroNerds.com. Follow @TheNeuroNerds on Twitter/Instagram and Like us at Facebook.com/TheNeuroNerds.SummaryIt's Pride Month and we are celebrating LGBTQ+ brain injury survivors. In this episode, Joe is chatting with Michael Shutt, a stroke survivor, playwright, actor and gay man from Los Angeles. Michael shares what it was like growing up gay from when he realized he was gay at a young age. They talk about the lack of representation he experienced when he was younger and how that affected him. He also shares the immense support he received from the gay community after his stroke and how that has helped him through recovery.Links MentionedFollow Michael on IG - https://instagram.com/whmikeMichael's one-man show - https://www.alessoninswimming.comCreditsIf you're a brain injury survivor who would like help embracing your new normal and get more support through recovery, go to www.YouSoRock.coachSupport The NeuroNerds podcast on Patreon and join our NeuroJedi High Council at www.Patreon.com/TheNeuroNerdsCheck out The NeuroNerds Amazon Shop at amazon.com/shop/theneuronerdsPlus get a free Audible trial at http://www.audibletrial.com/theneuronerds!Co-hosted by Joe Borges and Lauren ManzanoFind Joe at http://joesorocks.com and @joesorocks on Twitter/InstagramSubmit your stroke/brain injury recovery story at https://www.joesorocks.com/submit-your-storyFind Lauren at @laurenlmanzano on Instagram, @tankbbg on TwitterProduced by Joe Borges and Felice LaZae, http://felicelazae.com, @felicelazae on Twitter/InstagramEdited by Marcellus WesleySponsored by Motus Nova, Avid Technology, and our Patreon Supporters

The NeuroNerds
Celebrating Pride with Jamie Coyle

The NeuroNerds

Play Episode Listen Later Jun 21, 2022 44:15 Transcription Available


All episodes are available at https://TheNeuroNerds.com. Follow @TheNeuroNerds on Twitter/Instagram and Like us at Facebook.com/TheNeuroNerds.SummaryIn honor of Pride month, Joe is featuring episodes with LGBTQ+ brain injury survivors. In this first featured episode, Joe is chatting with Jamie Coyle, a stroke survivor from Rhode Island. She chats about the challenges of suffering a stroke as an adolescent while also coming out at a young age as a queer woman. We hope that by sharing these stories, we can help inspire and support other LGBTQ+ brain injury survivors. If you are an LGBTQ+ brain injury survivor, please connect with us on our socials!Links MentionedFollow Jamie on Instagram - https://instagram.com/coyleeeeFollow Jamie's blog - https://instagram.com/strokesurvivorsneverquitCreditsIf you're a brain injury survivor who would like help embracing your new normal and get more support through recovery, go to www.YouSoRock.coachSupport The NeuroNerds podcast on Patreon and join our NeuroJedi High Council at www.Patreon.com/TheNeuroNerdsCheck out The NeuroNerds Amazon Shop at amazon.com/shop/theneuronerdsPlus get a free Audible trial at http://www.audibletrial.com/theneuronerds!Co-hosted by Joe Borges and Lauren ManzanoFind Joe at http://joesorocks.com and @joesorocks on Twitter/InstagramSubmit your stroke/brain injury recovery story at https://www.joesorocks.com/submit-your-storyFind Lauren at @laurenlmanzano on Instagram, @tankbbg on TwitterProduced by Joe Borges and Felice LaZae, http://felicelazae.com, @felicelazae on Twitter/InstagramEdited by Marcellus WesleySponsored by Motus Nova, Avid Technology, and our Patreon Supporters

The NeuroNerds
Go To Sleep! It's Good For Your Mental Health

The NeuroNerds

Play Episode Listen Later Jun 14, 2022 52:38 Transcription Available


All episodes are available at https://TheNeuroNerds.com. Follow @TheNeuroNerds on Twitter/Instagram and Like us at Facebook.com/TheNeuroNerds.SummaryJoe and Lauren are tired - after having Covid in the last couple of months on top of the other stresses of life not to mention living with brain injuries, they're both pretty exhausted. So this episode is about the importance of sleep and rest and their correlation to mental health. They talk about the disruption of the circadian rhythm and its effect on mental health plus holistic remedies for various mental health ailments including sleep, hydration, exercise, therapy, and more. What are some ways you take care of your mental health? Please share on our socials!Links MentionedSleep deprivation and impact on mental health - https://www.columbiapsychiatry.org/news/how-sleep-deprivation-affects-your-mental-healthWhat is Circadian Rhythm? - https://www.sleepfoundation.org/circadian-rhythm CreditsIf you're a brain injury survivor who would like help embracing your new normal and get more support through recovery, go to www.YouSoRock.coachSupport The NeuroNerds podcast on Patreon and join our NeuroJedi High Council at www.Patreon.com/TheNeuroNerdsCheck out The NeuroNerds Amazon Shop at amazon.com/shop/theneuronerdsPlus get a free Audible trial at http://www.audibletrial.com/theneuronerds!Co-hosted by Joe Borges and Lauren ManzanoFind Joe at http://joesorocks.com and @joesorocks on Twitter/InstagramSubmit your stroke/brain injury recovery story at https://www.joesorocks.com/submit-your-storyFind Lauren at @laurenlmanzano on Instagram, @tankbbg on TwitterProduced by Joe Borges and Felice LaZae, http://felicelazae.com, @felicelazae on Twitter/InstagramEdited by Marcellus WesleySponsored by Motus Nova, Avid Technology, and our Patreon Supporters

The NeuroNerds
Second Chance At Life Post Brain Injury

The NeuroNerds

Play Episode Listen Later Jun 7, 2022 45:17 Transcription Available


All episodes are available at https://TheNeuroNerds.com. Follow @TheNeuroNerds on Twitter/Instagram and Like us at Facebook.com/TheNeuroNerdsSummaryIn this episode Joe is chatting with TBI survivor Desirée Ford.  After surviving an almost fatal car accident, Desirée shares her new lease on life and how she's making the most of her second chance.  Joe and Desirée talk about living life to the fullest and she shares her recovery journey thus far. How do you live life to the fullest?  Please share with us on our socials!Links MentionedFollow Desirée on IG - https://instagram.com/fesireedord  CreditsIf you're a brain injury survivor who would like help embracing your new normal and get more support through recovery, go to www.YouSoRock.coachSupport The NeuroNerds podcast on Patreon and join our NeuroJedi High Council at www.Patreon.com/TheNeuroNerdsCheck out The NeuroNerds Amazon Shop at amazon.com/shop/theneuronerdsPlus get a free Audible trial at http://www.audibletrial.com/theneuronerds!Co-hosted by Joe Borges and Lauren ManzanoFind Joe at http://joesorocks.com and @joesorocks on Twitter/InstagramSubmit your stroke/brain injury recovery story at https://www.joesorocks.com/submit-your-storyFind Lauren at @laurenlmanzano on Instagram, @tankbbg on TwitterProduced by Joe Borges and Felice LaZae, http://felicelazae.com, @felicelazae on Twitter/InstagramEdited by Marcellus WesleySponsored by Motus Nova, Avid Technology, and our Patreon Supporters

The NeuroNerds
The NeuroNerds Crew Celebrate 200 Episodes!

The NeuroNerds

Play Episode Listen Later May 31, 2022 51:21 Transcription Available


All episodes are available at https://TheNeuroNerds.com. Follow @TheNeuroNerds on Twitter/Instagram and Like us at Facebook.com/TheNeuroNerdsWe're celebrating 200 episodes with Joe, Lauren as well as special guest and our producer, Felice! They reminisce on some of their favorite episodes and what our plans are for the future including Joe's YouSoRock Survivor To Thriver Program and expanding our support for the community. Plus Felice nerds out on the production for our episodes and how she uses sound design along with our editor Marcellus to tell brain injury survivor guest stories. What is your favorite episode? Please let us know on our socials!Links MentionedHighlighted episodes:Episode 24 - Disney Princess Hair Magic - https://www.theneuronerds.com/podcast/disney-princess-hair-magic/Episode 40 - AVM Survivor Thomas Mejia Part 1 - https://www.theneuronerds.com/podcast/avm-survivor-thomas-mejia-part-1/Episode 41 - AVM Survivor Thomas Mejia Part 2 - https://www.theneuronerds.com/podcast/avm-survivor-thomas-mejia-part-2/Episode 57 - Emilia Clarke, SameYou.org And Imposter Syndrome Part 2 - https://www.theneuronerds.com/podcast/emilia-clarke-sameyou-org-and-imposter-syndrome-part-2/Episode 64 - Mother's Day Edition with Bridget Chiovari - https://www.theneuronerds.com/podcast/mothers-day-edition-with-bridget-chiovari/Our Editor Marcellus Wesley - https://www.soundsignature.productions/Dazzler X-Men Character - https://en.wikipedia.org/wiki/Dazzler_(Marvel_Comics)Bad Girls (song) - https://en.wikipedia.org/wiki/Bad_Girls_(Donna_Summer_album)If you're a brain injury survivor who would like help embracing your new normal and get more support through recovery, go to www.YouSoRock.coachSupport The NeuroNerds podcast on Patreon and join our NeuroJedi High Council at www.Patreon.com/TheNeuroNerdsCheck out The NeuroNerds Amazon Shop at amazon.com/shop/theneuronerdsPlus get a free Audible trial at http://www.audibletrial.com/theneuronerds!Co-hosted by Joe Borges and Lauren ManzanoFind Joe at http://joesorocks.com and @joesorocks on Twitter/InstagramSubmit your stroke/brain injury recovery story at https://www.joesorocks.com/submit-your-storyFind Lauren at @laurenlmanzano on Instagram, @tankbbg on TwitterProduced by Joe Borges and Felice LaZae, http://felicelazae.com, @felicelazae on Twitter/InstagramEdited by Marcellus WesleySponsored by Motus Nova, Avid Technology, and our Patreon Supporters

The NeuroNerds
Choosing Comedy Over Tragedy Post-Stroke

The NeuroNerds

Play Episode Listen Later May 24, 2022 57:30 Transcription Available


All episodes are available at https://TheNeuroNerds.com. Follow @TheNeuroNerds on Twitter/Instagram and Like us at Facebook.com/TheNeuroNerds.SummaryAs we continue to spread stroke awareness for Stroke Awareness Month, we're also spreading awareness about mental health as May is always Mental Health Awareness Month. In this episode, Joe is chatting with his good friend and fellow stroke survivor, Mimi Hayes. Mimi is an author and comedian so she's the perfect guest to chat about the benefits of laughing and comedy when it comes to mental health and stroke recovery. They talk about how the use comedy as a tool to help them cope with the ups and downs of the recovery journey. What mental health tools do you use to help during brain injury recovery? Please share on our socials!Links MentionedMimi's website - http://mimihayes.comFollow Mimi on Tiktok - https://www.tiktok.com/t/ZTdnxSj8RFollow Mimi on IG - https://instagram.com/mimihayesbrainIf you're a brain injury survivor who would like help embracing your new normal and get more support through recovery, go to www.YouSoRock.coachSupport The NeuroNerds podcast on Patreon and join our NeuroJedi High Council at www.Patreon.com/TheNeuroNerdsCheck out The NeuroNerds Amazon Shop at amazon.com/shop/theneuronerdsPlus get a free Audible trial at http://www.audibletrial.com/theneuronerds!Co-hosted by Joe Borges and Lauren ManzanoFind Joe at http://joesorocks.com and @joesorocks on Twitter/InstagramSubmit your stroke/brain injury recovery story at https://www.joesorocks.com/submit-your-storyFind Lauren at @laurenlmanzano on Instagram, @tankbbg on TwitterProduced by Joe Borges and Felice LaZae, http://felicelazae.com, @felicelazae on Twitter/InstagramEdited by Marcellus WesleySponsored by Motus Nova, Avid Technology, and our Patreon Supporters

The NeuroNerds
Smiling While Surviving Stroke with Hannah Davidson

The NeuroNerds

Play Episode Listen Later May 18, 2022 60:57 Transcription Available


All episodes are available at https://TheNeuroNerds.com.  Follow @TheNeuroNerds on Twitter/Instagram and Like us at Facebook.com/TheNeuroNerds.Summary:In this episode, Joe is chatting with Hannah Davidson, a stroke survivor, mother, and business owner. They talk about her experience of recovering from stroke while balancing motherhood, supporting the brain injury survivor community and her experience being one of Joe's first beta clients in his Survivor To Thriver program. Links MentionedFollow Hannah on Instagram - https://instagram.com/hannah_hasa_braininjuryFollow Hannah's clothing company, Joy Pop on Instagram - https://instagram.com/joypopmodestshopJoy Pop official website - https://joypopmodestshop.com/ CreditsIf you're a brain injury survivor who would like help embracing your new normal and get more support through recovery, go to www.YouSoRock.coachSupport The NeuroNerds podcast on Patreon and join our NeuroJedi High Council at www.Patreon.com/TheNeuroNerdsCheck out The NeuroNerds Amazon Shop at amazon.com/shop/theneuronerdsPlus get a free Audible trial at http://www.audibletrial.com/theneuronerds!Co-hosted by Joe Borges and Lauren ManzanoFind Joe at http://joesorocks.com and @joesorocks on Twitter/InstagramSubmit your stroke/brain injury recovery story at https://www.joesorocks.com/submit-your-storyFind Lauren at @laurenlmanzano on Instagram, @tankbbg on TwitterProduced by Joe Borges and Felice LaZae, http://felicelazae.com, @felicelazae on Twitter/InstagramEdited by Marcellus WesleySponsored by Motus Nova, Avid Technology, and our Patreon Supporters

LiveWell Talk On...
198 - Stroke Rehabilitation (Kevin Komenda, DPT, NCS)

LiveWell Talk On...

Play Episode Listen Later May 4, 2022 18:19


Kevin Komenda, senior physical therapist at St. Luke's, joins Dr. Arnold to discuss rehabilitation for stroke patients, common post-stroke issues, types of therapy and much more. To learn more about rehab services at St. Luke's, call St. Luke's Physical Medicine and Rehab at (319) 369-7331. Do you have a question about a trending medical topic? Ask Dr. Arnold! Anything from COVID-19 to the latest technologies and procedures to general questions about a service provided at UnityPoint Health - Cedar Rapids. Submit your question and it may be answered by Dr. Arnold on the podcast! Submit your questions at: https://www.unitypoint.org/cedarrapids/submit-a-question-for-the-mailbag.aspx 

Stroke Busters
Stroke Recovery Throughout The Continuum of Care with Dr. Nneka Ifejika, MD MPH

Stroke Busters

Play Episode Listen Later Apr 7, 2022 37:31


In this episode we sat down withDr. Nneka Ifejika, Associate Professor of Physical Medicine and Rehabilitation and Section Chief of Stroke Rehabilitation at UT Southwestern Medical Center, following her Grand Rounds presentation, Stroke Recovery Throughout The Continuum of Care at McGovern Medical School. She has secondary appointments in the departments of Neurology, and Population and Data Sciences, and has both clinical and research interests spanning each of these fields. Outside of her numerous research accolades, Dr. Ifejika has exceled as a clinician, earning Texas Monthly's title of “super doctor” in each year from 2018 to 2021, and “Top Doctor” in Physical Medicine & Rehabilitation; awarded each by H Texas Magazine, Texas Monthly Magazine and Houstonia Magazine in numerous years from 2014-2018. She is beloved by her patients, and strongly missed by her colleagues here at UT Houston. Ideas and opinions are our own and this podcast is not a substitute for expert medical advice. The Institute for Stroke and Cerebrovascular Disease (UTHealth Stroke Institute) http://www.utstrokeinstitute.com/ UTHealth Stroke Institute Vascular Neurology Fellowship https://www.uth.edu/stroke-institute/training/vascular-neurology-fellowship Dr. Nneka Ifejika https://utswmed.org/doctors/nneka-ifejika/ Hosts: Amy Quinn, Pam Zelnik Twitter: @UTHealthStroke Instagram: @UTHealthStroke Facebook: facebook.com/uthealthstroke

Walking On Air
Stroke Rehabilitation and Nordic Walking with Derek Holloway

Walking On Air

Play Episode Listen Later Apr 6, 2022 16:12


In this episode, I'm talking to Derek Holloway, who qualified as a British Nordic Walking instructor in September 2021, which is a remarkable achievement, as in 2018, during the Beast from the East, Derek contracted pneumonia.  Whilst in hospital recovering, he suffered a stroke, which affected his limbs and mobility.  Through perseverance, physiotherapy and nordic walking, Derek has regained his fitness and has kindly agreed to share his experience with us today.Further ResourcesStroke AssociationFind An Instructorhttps://britishnordicwalking.org.uk/apps/store-locatorIf you have enjoyed this podcast, I would be very grateful if you could show your support by buying me a coffee!  This enables me to continue producing these podcasts, as it will go towards covering the server and podcast platform licenses.   Not only is Nordic Walking a whole body workout, but it is also one of the safest and most sociable way to exercise.  Classes always finish up in a cafe enjoying a coffee together. Many thanks, Mary xI'm Mary Tweed, a British Nordic Walking instructor with Nordic Walking East Anglia. If you wish to share your story, do get in touch by emailing hello@walkingonairpodcast.co.uk#NordicWalking #WeAreNordicWalking #BritNW #BritishNordicWalking #INWA #NordicWalkingEastAnglia #onwf #nordicwalkinguk #walx #nordicwalkingaustralia #nordixx #urbanpoling #ANWA #anwaUSA #nordicwalkingnewzealand #nordicpolewalking #nordicpolewalkingnovascotia #nordicacademy #polewalking #lekipoles #exelpoles #fitnesswalking #skiwalking #polewalking  #greengym #mentalhealth #mentalwellbeing   #weightloss #posture #useitorloseit   #activeageing #nutritiousmovement  #exerciseanywhere  #BetterHealth #GreatOutdoors #fitnessforallages #walkwithease #weightmanagement #stroke #parkinsonsSupport the show (https://www.buymeacoffee.com/walkingonair)Support the show

Vitality Health Show
During Medical School, a Stroke Changed the Course of His Life.

Vitality Health Show

Play Episode Listen Later Dec 2, 2021 60:00


While attending Medical School, Dr. Edgley suffered a Stroke, After a long hard fought battle, This event changed the course of his life, He is now helping others that have suffered the devastating effects of strokes. Dr. Edgley is the Director of Stroke Rehabilitation at the University of Utah. He is involved with both clinical aspects of stroke rehabilitation and with research on new techniques and methods to promote and facilitate greater function after stroke. His aim is to promote greater functional independence in stroke patients throughout the clinical continuum of care and through the spectrum of disabilities of impairment related to stroke. Dr. Edgley's clinical practice involves all aspects related to stroke rehabilitation, with particular emphasis on management of post-stroke spasticity, hemiplegic shoulder pain, gait quality and gait speed, and motor recovery after stroke. Dr. Steven Edgley graduated from Brigham Young University in 1997, with medical school completion at Loyola University in Chicago, IL in 2001. He completed his residency in Physical Medicine and Rehabilitation in 2006 at the University of Utah in Salt Lake City ,UT, and received his board certification in 2007 with the American Board of Physical Medicine and Rehabilitation. In 2013, Dr. Edgley was given the Healthcare Hero Award by Utah Business Magazine, and is the author of two books: Life Between Two Gardens (2018); Thriving After Your Stroke (2019).

Vitality Health Show
During Medical School, a Stroke Changed the Course of His Life.

Vitality Health Show

Play Episode Listen Later Dec 2, 2021 60:00


While attending Medical School, Dr. Edgley suffered a Stroke, After a long hard fought battle, This event changed the course of his life, He is now helping others that have suffered the devastating effects of strokes. Dr. Edgley is the Director of Stroke Rehabilitation at the University of Utah. He is involved with both clinical aspects of stroke rehabilitation and with research on new techniques and methods to promote and facilitate greater function after stroke. His aim is to promote greater functional independence in stroke patients throughout the clinical continuum of care and through the spectrum of disabilities of impairment related to stroke. Dr. Edgley's clinical practice involves all aspects related to stroke rehabilitation, with particular emphasis on management of post-stroke spasticity, hemiplegic shoulder pain, gait quality and gait speed, and motor recovery after stroke. Dr. Steven Edgley graduated from Brigham Young University in 1997, with medical school completion at Loyola University in Chicago, IL in 2001. He completed his residency in Physical Medicine and Rehabilitation in 2006 at the University of Utah in Salt Lake City ,UT, and received his board certification in 2007 with the American Board of Physical Medicine and Rehabilitation. In 2013, Dr. Edgley was given the Healthcare Hero Award by Utah Business Magazine, and is the author of two books: Life Between Two Gardens (2018); Thriving After Your Stroke (2019).

Know Stroke Podcast
Interview with Brooke Medel, Stroke Nurse Navigator at UConn Health

Know Stroke Podcast

Play Episode Listen Later Nov 13, 2021 55:58


Know Stroke Podcast Season 2 Episode 5Navigator: one that navigates or is qualified to navigate.Who are some people that come to mind when you think of navigators? Most navigators have personality traits of wanting to help others achieve their goals. Brooke Medel is a Stroke Nurse Navigator at UConn Health in Farmington, Connecticut. Joining the team at UConn in June Brooke has come into a crucial role supporting stroke survivors in the transition of care from the hospital back home and in adapting to life after stroke. Sounds like an important job, right? Brooke was born for this job. Once you listen to her story you'll understand the passion she brings into the role and why her patients are so lucky to have her.In this episode Brooke brings us through her day to day as a stroke nurse navigator. We explore the many challenges faced by stroke survivors and their loved ones at the point of discharge and her approach to supporting these challenges. You'll also hear about the Stroke Clinic at UConn Health and the amazing support they provide to the stroke thriver community. Brooke gives us a recap of the 3rd Annual Stroke Symposium which was held last month as part of World Stroke Day, October 29th. We've shared a link to a replay of that event for you below, and also links to the UConn support group which meets the fourth Monday of every month. You can attend these support groups in person if you are in the Central Connecticut area, or you can tune in virtually. Check it out, ask questions, and connect with fellow stroke thrivers!Show Resources for this Episode:Support group: https://health.uconn.edu/stroke-center/events-and-programs/Event recap: http://mediasite.uchc.edu/mediasite41/Play/963820ef2b6344eeb76e3cbfdc303bfc1dFACEBOOK PAGE: Search Connecticut Stroke Awareness (made by one of the stroke survivors that shares information from UConn support group)For more on “In the News” segment referenced in this episode visit:https://journals.lww.com/neurotodayonline/fulltext/2021/11040/the_challenges_of_maintaining_telehealth_access_in.8.aspxAbout the Podcast: To listen to this episode on our podcast channel visit:  https://knowstrokepodcast.buzzsprout.com/ To watch this episode on our VideoCast YouTube Channel:https://youtu.be/p042m3p3p_AMusic Credit and Podcast Production by Jake Dansereau, connect at JAKEEZo on Soundcloud  @user-257386777About the Know Stroke PodcastWelcome to the Know Stroke Podcast of Co-Founders David Dansereau and Michael Garrow to support the reach of our growing TeamEnable Us Community and the Mission of our EnableUs Digital Stroke Support Platform at enable4us.comWe get you caught up on the latest stroke science, worldwide community support collaborations and interview top researchers and health care experts in the field. We also invite all stroke thrivers to join us so together we can share success to help you manage your own condition and maximize your true rehabilitation potential and preventive care.Want to join us as a stroke thriver guest and tell your stroke story on our website or this podcast? Contact us here: https://enable4us.For more information about joining our show or advertising with us visit: https://enable4us.comSupport the show (https://paypal.me/SmartMovesPT)

Brighton Chamber Podcast
09: PT Solutions Physical Therapy

Brighton Chamber Podcast

Play Episode Listen Later Aug 6, 2021 26:48


Join us for a great discussion with Stephen Magee from PT Solutions. We discuss a variety of treatments and therapies - from PT to Dry Needles, their impact and the numerous types of injuries and ailments they can treat - from spine, back, ankle to migraines, and more! Show Links Learn more about the Brighton Chamber by visiting our website. Guest Links PT Solutions Physical Therapy Physical Therapy, Cardiac Rehabilitation, Concussion Rehabilitation, Dry Needling, Golf Screening, Hand & Wrist Therapy, Manual Therapy Movement DisorderRehabilitation, Neurological Rehabilitation, Orthopedic and Sports Injuries, Pediatric Physical Therapy, Performance Enhancement Post-Operative Rehabilitation, Running Analysis, Stroke Rehabilitation, Temporal Mandibular Disorder – TMJVestibular, TherapyWorkers' Compensation  Website: https://ptsolutions.com/clinics/brighton/  LinkedIn: https://www.linkedin.com/in/stephen-magee-pt-dpt-ocs-85a16784/  Sponsors This podcast is sponsored by Cabinets Express. They are Brighton's local source for quick, easy, and affordable cabinetry. Stop by during their grand opening from August 16 through the 31st for a chance to win free kitchen cabinets and countertops, a $7,000 value! For every order placed over $2,500 during the grand opening, Cabinets Express will donate $100 to Habitat for Humanity of Livingston County.  Visit their website: https://cabinets-express.com   

The NOGGINS AND NEURONS Podcast

OVERVIEW: "Carr and Shephard are two Aussie physical therapists. They were the first to dovetail modern motor learning with rehab which was a sea change from the neurofacilitation crowd. Janet Carr, one of them, passed away in 2014. But they wrote this great book, I think it's called, “Stroke Rehabilitation.” I think that's what it's called. I wrote a review on Amazon, you can read it, it's just glowing because I just, I adore this book...But they make it very, very clear...There's four situations in which you're most likely to fall. And this is especially for people with brain injury, but also for anybody. Starting to walk, so right when you start the acceleration of walking; when you stop walking...you know...can you come to a full stop and not lose your balance? Turning – a whole bunch of problems with turning because you know, you have to shift your gaze constantly, you have to shift your feet constantly...and then uneven surfaces. So when you're out walking and you're thinking “Wow, I don't want to be afraid of walking, I want to get out and I want to see things and I want to see people and I want to do my life, think about those four situations - When you start walking, when you stop walking, when you're turning and then any sort of uneven surfaces – be really hyper-focused on those four situations." EPISODE SUMMARY: This episode of NOGGINS & NEURONS: Stroke and TBI Recovery Simplified is all about not falling...Pete and Deb talk about helping people not to fall. We started and ended with the rabbit hole topic of Deb's anthropology degree and bipedalism – super fun part of the conversation! Climbing out of the hole, Pete and Deb then talked about: The relationship of medications to fall and the Paper Bag Test Risk factors for falls in stroke survivors Downward health spiral that can occur if survivors fall What to do if you see someone fall Home safety tips for fall prevention This meaningful conversation gets into the literature, preventing falls, the negative impact of fear of falling, assessments and home safety. We share tips and tricks from the PT and OT perspectives. We hope survivors, caregivers and clinicians all find value in this conversation. As always, we want to hear your top takeaways! LINKS TO ARTICLES, BOOKS AND OTHER IMPORTANT INFORMATION: Fall Risk Assessment Tool - Johns Hopkins Medicine   Xu, T., Clemson, L., O'Loughlin, K., Lannin, N., Dean, C., & Koh, G. (2018). Risk factors for falls in community stroke survivors: A systematic review and meta analysis. Archives of Physical Medicine and Rehabilitation. 99:563-573. Cho, K., Yu, J., & Rhee, H. (2015). Risk factors related to falling in stroke patients: a cross-sectional study. Journal of Physical Therapy Science. 27: 1751-1753. Use your fav podcast app to access Noggins and Neurons CONNECT WITH US: Questions and Comments about the podcast: NogginsAndNeurons@gmail.com DONATE TO NOGGINS & NEURONS: Donate to Noggins And Neurons and get an Allstar Pete Trading Card Using your PayPal app: RESOURCES: Information about Pete's blog, book, “Stronger After Stroke: Your Roadmap to Recovery” 3rd edition,  and  talk. Blog Book: Stronger After Stroke, 3rd edition Pete's talk for the American College of Rehabilitation Medicine. Deb's OT resources The OT's Guide to Mirror Therapy Tri-Fold Mirror (US address only) Occupational Therapy Intervention: Scavenger Hunt Visual Scanning for Adults REQUEST TO BE A GUEST ON NOGGINS & NEURONS. If you're passionate about stroke recovery and have information or a story you believe will help others, we'd love help you share it on the show. Complete the guest request form below and let's see if we're a good fit!   Guest Request Form MUSIC: “Soft Inspiration” by Scott Holmes/Scott Holmes Music/scottholmesmusic.com

A Neuro Physio Podcast
Professor Suzanne Kuys - Clinical Masters & Research Higher Degree tips, Stroke Rehab

A Neuro Physio Podcast

Play Episode Listen Later Dec 15, 2020 48:47


Professor Suzanne Kuys is the National Head, School of Allied Health at Australian Catholic University. She runs the Masters of Rehabilitation programs available in Neuro Physio, Gero Physio, OT and SP. This episode features the Masters and Undergrad courses at ACU, the ‘average' day in the life of an academic, Suzanne's research interests in stroke rehabilitation, and of course her career pathway. Suzanne also shares some expert tips for those thinking about a PhD or other research higher degree.2.34 - Intro2.53 - Career pathway5.40 - Queensland Health Advanced Clinician9.40 - Starting PhD - Increasing active therapy using a treadmill14.25 - Demonstrating to physios that treadmills are beneficial for gait training18.55 - Current research - the IMPACT trials. High intensity treadmill training for fitness & self management21.55 - The PhD journey24.02 - Where to start when you're thinking about doing research – get talking to people26.31 - Ideas for contacting research mentors28.00 - Average work day31.06 - Moving from clinical to academia 36.59 - Undergraduate Physio courses at ACU38.06 - Master of Rehabilitation programs at ACU43.22 - Some of Suzanne's current honours and PhD student research

Bridging the Gap with Eliza duPont, OTD
Episode 4: Post-Stroke Rehabilitation Services

Bridging the Gap with Eliza duPont, OTD

Play Episode Listen Later Sep 23, 2020 20:41


The healthcare services we receive after having a life-changing experience such as a stroke can deeply impact our long-term recovery. However, across the U.S. research shows that in the acute-care setting there is often a lack of incentivization to improve functional outcomes and a lack of formal guidance for the appropriate dosage of rehabilitation therapies such as occupational therapy, physical therapy, and speech-language pathology. What do we know about how to best treat patients in this early stage after experiencing a stroke? And further, how can we optimize a healthcare service delivery system to better serve people after stroke? Listen to this deeply informative and eye-opening conversation with researchers and professors Drs. Amit Kumar and Pamela Bosch of Northern Arizona University. --- Support this podcast: https://podcasters.spotify.com/pod/show/eliza-dupont/support