Episodit
-
In this heartfelt and inspiring episode, I sit down with Wilamena Dyer to explore her journey living with Tourette Syndrome and OCD. We dive into the challenges, triumphs, and surprising lessons that come with embracing neurodiversity, self-acceptance, and resilience. Wilamena shares candid stories about her experiences with tics, coping strategies, and how music has become a transformative force in her life. We also discuss different therapies, creative outlets, and why finding what works for you is key to thriving with Tourette's. Join us as we talk about the power of advocacy, leaning into your unique strengths, and using creativity as a path to personal growth.
Wilamena Dyer is an alum of the NJCTS Tim Howard Leadership Academy. She is currently a first year university student studying percussion in London.
Episode Highlights:
[0:53] - Kicking things off: Introducing Wilamena and her journey with Tourette Syndrome.
[3:04] - Wilamena's treatment toolbox: Medication, ERP, and the value of practical therapies.
[7:16] - A closer look at Habit Reversal Training (HRT) and its challenges.
[11:06] - How Wilamena’s tics evolved over the years and the resilience it built.
[15:33] - Michael’s story of managing a painful tic with distraction and multitasking.
[18:21] - Understanding "cousins" of Tourette's: Wilamena’s experience with OCD.
[22:10] - The uphill climb of ERP therapy and how it changed Wilamena’s life.
[24:05] - Wilamena’s future plans: Studying music therapy and spreading awareness.
[27:52] - Advice for the newly diagnosed: Embrace your tics and live fully.Links & Resources:
Wilamena's website: https://www.tictastic.com/ Wilamena's youtube channel: https://www.youtube.com/channel/UClILmxZbGU8nX8oxrCLGcOgRemember, each story shared on this podcast brings light and understanding to the diverse experiences within the Tourette's community. Your journey is your own, and it's filled with potential and promise. If this episode resonated with you, I encourage you to like, share, and leave a review to help us connect with more listeners.
Send us a Text Message.
Support the Show.
Send us a text
Support the show
-
Welcome back to The UpTic! As 2024 comes to a close, I’m reflecting on the incredible conversations we’ve had this year and the powerful insights shared by our guests. In this special highlights episode, we revisit some of the standout moments from the season, featuring discussions on occupational therapy, neurodiversity advocacy, groundbreaking research, and more.
Dive into inspiring stories, actionable advice, and cutting-edge research that not only demystify TS but also shine a light on the strength and resilience of the TS community. Press play and hear from parents, researchers, advocates, and professionals who’ve shared their experiences and wisdom with us throughout the year.
Episode Highlights:
[0:00] – Opening Reflections: Reflecting on the mission of the podcast and the unique diversity of Tourette Syndrome cases.
[3:20] – Empowering Through Occupational Therapy: Practical life tools for TS management with Shannon Floyd and Jan Rowe.
[4:59] – Empathy in Action: Nurse Jillian Firenze shares how laughter and support from her parents shaped her journey.
[6:29] – Parenting with Positivity: Insights from Rena and Maggie LaSalle on minimizing stress and building a support system for children with TS.
[9:37] – Advocating Unapologetically: Harvard freshman Slayton Cooper discusses the importance of owning your needs and advocating for them confidently.
[12:00] – Breaking the Feedback Loop: Dr. Angie Landeros-Weisenberger explains the brain's sensory gating system and the science of habit reversal.
[14:23] – Shaping the Home Environment: Drs. Jeremy and Jeff Lichtman, father and son psychologists who discuss what worked in their home environment.
[19:30] – Do You Tick in Your Sleep?: Occupational therapist Ben Mooney explores the connection between sleep and overall well-being in TS management.
[23:57] – Understanding TS Through Habits: Drs. Jay and Max Tischfield discuss the role of habit formation in TS and their cutting-edge research with Tourette mice.
[31:15] – Holistic Approaches to Care: Drs. Lori Rockmore and Dr. Daniela Colognori emphasize the power of attitude and family support in shaping a child’s long-term outlook.
[34:04] – Managing Public Perception: Dr. Robert Zambrano on navigating social situations and building resilience in individuals with TS.Links & Resources:
Remember, each story shared on this podcast brings light and understanding to the diverse experiences within the Tourette's community. Your journey is your own, and it's filled with potential and promise. If this episode resonated with you, I encourage you to like, share, and leave a review to help us connect with more listeners.Send us a Text Message.
Support the Show.
Send us a text
Support the show
-
Puuttuva jakso?
-
Joining me this week are two incredible guests from the NJCTS Community Connections program: Peyton Estabrook, a long-time participant, and Alina Lawas Osborn, the program coordinator. In this episode, we discuss how creating safe spaces for people with Tourette Syndrome can foster connection, reduce isolation, and empower individuals to thrive. From the challenges of starting new communities to the creative solutions that bring people together, this conversation is packed with insights for anyone looking to build or find a community of their own.
Episode Highlights:
[0:29] - Introducing Peyton and Alina: leaders in community building at NJCTS.
[2:20] - Alina shares how she came full circle from a Community Connections member to program coordinator.
[5:18] - Peyton talks about overcoming self-consciousness and the value of finding a safe space.
[8:14] - How connecting with others in marginalized groups fosters empowerment and strength.
[11:18] - Zoom meetings versus in-person events: the strengths and limitations of each format.
[13:11] - Strategies for building community in the digital age and the decline of “third spaces.”
[19:04] - Ideas for improving virtual community events, including breakout groups and “fast friends” sessions.
[27:11] - Finding hope and resilience through community and learning from others’ experiences.
[30:29] - Alina’s advice for approaching new groups with curiosity and breaking patterns of isolation.
[36:03] - Final reflections on building community as an ongoing, collaborative process.Links & Resources:
Guests:
Alina Lawas Osborn - Program Coordinator for NJCTSPeyton Estabrook - Community Connections memberThe next community connections is on December 16 at 7pm ET. Listeners can register here: https://njcts.org/event/community-connections-for-adults-with-ts-10/
Remember, each story shared on this podcast brings light and understanding to the diverse experiences within the Tourette's community. Your journey is your own, and it's filled with potential and promise. If this episode resonated with you, I encourage you to like, share, and leave a review to help us connect with more listeners.
Send us a Text Message.
Support the Show.
Send us a text
Support the show
-
In this episode, I sit down with Dr. Lori Rockmore and Dr. Daniela Colognori, two clinical psychologists with extensive experience treating individuals with Tourette syndrome (TS) and related conditions. Both have a rich history of working at the Rutgers TS Clinic, where they gained invaluable insights into providing holistic, family-focused care. Throughout our conversation, we discuss their personal journeys into the field, how their practice has evolved, and the incredible strengths they see in their patients.
We discuss what it means to offer holistic treatment, going beyond the tics themselves to address broader issues like school performance, family dynamics, and other comorbid conditions such as OCD and anxiety. Dr. Rockmore and Dr. Colognori share stories of resilience, the importance of seeing the whole person, and how families play a crucial role in supporting individuals with TS.
Episode Highlights:
[01:17] – Dr. Rockmore shares how her work in Tourette began, sparked by her collaboration with Dr. Kathy Budman.
[03:57] – Dr. Colognori recounts how she was "randomly" placed in the Rutgers TS program and ended up working alongside Dr. Rockmore.
[06:49] – Holistic care explained: Addressing the patient as a whole, including family, school challenges, and comorbidities like OCD and anxiety.
[09:34] – Dr. Rockmore and Dr. Colognori discuss the strengths of children with TS, emphasizing their talents beyond their tics.
[12:45] – Exploring the challenges and rewards of training students to treat TS, and how the Rutgers program equips them for treating complex conditions.
[20:17] – Practical advice: Dr. Rockmore and Dr. Colognori outline how they prioritize interventions based on functional impairments and patient input.
[24:20] – Advice to patients with Tourette’s: "Tics are just one part of who you are—pursue your passions and live your life to the fullest."Links & Resources:
Remember, each story shared on this podcast brings light and understanding to the diverse experiences within the Tourette's community. Your journey is your own, and it's filled with potential and promise. If this episode resonated with you, I encourage you to like, share, and leave a review to help us connect with more listeners.
Send us a Text Message.
Support the Show.
Send us a text
Support the show
-
Let’s get to work and discuss job searching and career building as a neurodivergent professional. Whether you're dealing with Tourette Syndrome, ADHD, or other conditions, this episode is packed with practical tips to help you navigate the often tricky job market. I’ll share advice on disclosing your condition during interviews, the importance of requesting accommodations, and how to frame your neurodivergence as a strength. Plus, I’ll break down some tools and strategies to help you manage the job search process and give you an edge when applying for positions in today’s competitive market.
Job Accommodation Network: https://askjan.org/ Job Scan: Gives feedback on your resume based on a job description: https://www.jobscan.co/ Huntr Chrome Extension: Also a smartphone app that helps save jobs: https://huntr.co/ Teal HQ: Website and smartphone app to keep track of job applications and interviews: https://www.tealhq.com/ Teal HQ Job Tracker Spreadsheet: https://www.tealhq.com/tools/job-tracker Neurodiversity Career Connector: Find inclusive and neurodivergent-friendly companies: https://ndcc.simplifyhire.com/ National Disability Rights Network: https://www.ndrn.org/ Leopold Talent: Career coaching and job search for neurodivergent professionals: https://www.leopoldtalent.com/
This conversation is for anyone looking to optimize their career approach—whether you're just starting out or you're already established but want to take your experience to the next level. We’re talking about everything from tackling applicant tracking systems (ATS) to turning your unique qualities into professional advantages. Join me as we explore how to land the right job and thrive in it!
[2:35] – The challenges of today's job market and how it's an employer’s market.
[6:50] – Navigating disclosure: Should you disclose your condition in an interview?
[12:18] – How to ask for accommodations at work and during the interview process.
[16:40] – Tips on tailoring your resume for applicant tracking systems (ATS).
[21:12] – Tools and resources for job seekers, including portfolio-building advice.
[26:00] – Reminders about key resources and support for neurodivergent professionals.
Links & Resources:Remember, each story shared on this podcast brings light and understanding to the diverse experiences within the Tourette's community. Your journey is your own, and it's filled with potential and promise. If this episode resonated with you, I encourage you to like, share, and leave a review to help us connect with more listeners.
Send us a text
Support the show
-
In this episode, we’re excited to sit down with Hilary Kruchowy, the new Executive Director of the New Jersey Center for Tourette Syndrome (NJCTS). Hilary shares her journey, from her beginnings in art history to her transition into nonprofit leadership, culminating in her new role at NJCTS. We dive into Hilary’s vision for the organization, particularly how she plans to build on the legacies of past leaders while bringing her own fresh perspective to the table. We also discuss the incredible impact of NJCTS programs, including the Leadership Academy and the Rutgers partnership, as well as some exciting upcoming events like the 20th Anniversary Gala and the Parent-Teen Summit. Whether you’re part of the TS community or just curious about the work being done, this conversation is a great way to get to know NJCTS and its future under Hilary’s leadership.
Episode Highlights:
[0:00] - A special announcement about the NJCTS 20th Anniversary Gala.
[2:11] - Hilary Kruchowy discusses her background in nonprofit work and how it prepared her for her new role.
[3:58] - Reflecting on the legacies of past leaders, Faith and Pat, and how Hilary plans to honor their work.
[7:50] - Hilary shares her vision for the future of NJCTS, including expanding programs to serve more of the TS community.
[10:00] - The global impact of NJCTS programs and the challenges of state-level funding.
[13:12] - The importance of educating pediatricians and neurologists about Tourette Syndrome.
[16:24] - Exciting new initiatives like the Parent-Teen Summit and how they foster connections within the TS community.
[22:56] - A deep dive into NJCTS’s advocacy work at the state level and the critical role it plays in securing funding.
[26:46] - How listeners can get involved with NJCTS, from volunteering to joining the mailing list.Links & Resources:
NJCTS 20th Anniversary Gala: https://njcts.org/20thanniversarygala/
Remember, each story shared on this podcast brings light and understanding to the diverse experiences within the Tourette's community. Your journey is your own, and it's filled with potential and promise. If this episode resonated with you, I encourage you to like, share, and leave a review to help us connect with more listeners.
Send us a Text Message.
Support the Show.
Send us a text
Support the show
-
In this episode of The UpTick, I chat with Dr. Robert Zambrano, a clinical psychologist and cognitive behavioral therapist specializing in Tourette Syndrome (TS), Obsessive-Compulsive Disorder (OCD), and anxiety disorders. Dr. Zambrano shares his journey from an OCD-focused practice to becoming a key figure in the treatment of Tourette's, discussing the overlap between TS and OCD and the unique therapeutic approaches he uses.
Dr. Zambrano is a certified expert in Cognitive Behavioral Therapy, particularly in Exposure and Response Prevention (ERP) for OCD, and has been working with patients since 2000. He is also involved with the NJCTS Tim Howard Leadership Academy and specializes in treating persistent tic disorders and body-focused repetitive behaviors (BFRBs). His practice, Stress and Anxiety Services of New Jersey, offers specialized telehealth services for anxiety disorders.
Episode Highlights:
[1:25] - Dr. Zambrano shares how he unexpectedly entered the field of Tourette Syndrome through his work with OCD.
[6:14] - Discussing the overlap between Tourette Syndrome and OCD and the percentage of people with TS who also have OCD.
[10:23] - Delving into "tourettic OCD" and how it differs from standard OCD, with real-world examples from Dr. Zambrano's practice.
[14:50] - The importance of practicing therapy techniques like Habit Reversal Training (HRT) at home and integrating them into daily life.
[18:07] - Addressing anxiety in people with Tourette’s and how it can exacerbate tics.
[27:30] - Understanding cognitive therapy and the power of recognizing that we don't have to act on every thought our brain produces.
[39:22] - How to respond when others don't react kindly to tics and the importance of finding your tribe.Links & Resources:
Dr. Robert Zambrano’s Website: http://www.stressandanxiety.com
Remember, each story shared on this podcast brings light and understanding to the diverse experiences within the Tourette's community. Your journey is your own, and it's filled with potential and promise. If this episode resonated with you, I encourage you to like, share, and leave a review to help us connect with more listeners.
Send us a Text Message.
Support the Show.
Send us a text
Support the show
-
In this episode, I have a heartfelt conversation with siblings Anna and Eric Baldwin, both of whom grew up with Tourette Syndrome (TS). Anna, a middle school math teacher, and Eric, a senior at Franklin and Marshall College, share their unique experiences of living with TS in a family where it was openly discussed and supported. We explore the dynamics of their childhood, the challenges and triumphs they faced, and how their shared experiences have shaped their lives today. Join us as we discuss the importance of support systems, the impact of early diagnosis, and the ways they’ve learned to advocate for themselves and others.
Discover the Baldwin siblings' journey from their early diagnosis to their roles as advocates and educators. The Baldwins provide insights on coping mechanisms, the significance of accommodations in school, self-acceptance, and advice for young people and families navigating life with TS. This conversation offers a candid look at the realities and resilience of living with TS.
Episode Highlights:
[02:15] The dynamics of growing up with siblings who also have TS.
[06:31] Early diagnosis and family support.
[10:22] Coping with tics at home and school.
[13:27] The role of advocacy and community involvement.
[19:38] Changes in awareness and understanding of TS over the years.
[21:29] Navigating college life with Tourette Syndrome.
[29:11] Importance of accommodations and early interventions.
[36:16] Leveraging ADHD strengths in teaching.
[37:03] Final advice for individuals and families affected by TS.
Remember, each story shared on this podcast brings light and understanding to the diverse experiences within the Tourette's community. Your journey is your own, and it's filled with potential and promise. If this episode resonated with you, I encourage you to like, share, and leave a review to help us connect with more listeners.
Send us a Text Message.
Support the Show.
Send us a text
Support the show
-
In this episode, I sit down with Ray Nardella, the Assistant Director of Resident Life for Student Conduct at the University of Maryland. Ray shares his extensive experience with public policy, disability law, and grassroots organizing, all while adding a touch of humor and warmth to our conversation. We discuss securing accommodations for individuals with Tourette's syndrome and other disabilities in various settings, from education to the workplace. Whether you're preparing for exams or navigating job accommodations, Ray offers practical advice and valuable insights to help you advocate for your needs effectively.
We also explore the broader implications of disability rights, discussing everything from legal protections to practical tips for everyday life. Ray’s passion for empowering individuals shines through as he provides a comprehensive guide to understanding and utilizing accommodations. This episode is a must-listen for anyone looking to better understand their rights and the resources available to support them.
Episode Highlights:
[1:31] Discussing Accommodations: From High School to Graduate School
[5:38] How to Get Accommodations for Graduate School Exams
[10:03] The Importance of Detailed Documentation
[12:45] Navigating Workplace Accommodations
[17:11] Legal Rights and Disclosure in the Workplace
[20:23] Practical Tips for Talking to Supervisors
[23:33] Accommodations Beyond Education and Employment
[27:50] Understanding Disability Rights in Different Sectors
[30:04] Legal Clinics and Pro Bono Work for Disability Rights
[32:08] Ray’s Personal Insights on Parenting and Tourette Syndrome
[35:23] Reflecting on Childhood and Advocacy
Links & Resources:
Job Accommodation Network: https://askjan.org/
Remember, each story shared on this podcast brings light and understanding to the diverse experiences within the Tourette's community. Your journey is your own, and it's filled with potential and promise. If this episode resonated with you, I encourage you to like, share, and leave a review to help us connect with more listeners.
Send us a Text Message.
Support the Show.
Send us a text
Support the show
-
In this episode, I'm joined by the brilliant Drs. Jay and Max Tischfield, father and son renowned Tourette researchers at Rutgers University. They share their fascinating journey into the world of Tourette Syndrome research, discussing how they use genetic data to create groundbreaking mouse models that mimic the human condition. We delve into the intricacies of gene mutations, the challenges of studying tics in mice, and the potential for these models to lead to effective treatments.
You'll hear about the Tischfields' unique father-son dynamic in the lab, their collaborative work with the NJCTS Sharing Repository, and the exciting prospects of using AI and advanced genetic editing to further understand and treat Tourette Syndrome. This episode offers a peek into the cutting-edge science that's pushing the boundaries of what we know about TS.
Episode Highlights:
[02:06] Jay's unexpected journey into TS research, sparked by a passionate advocate.
[05:35] Max's fascination with using gene editing to create Tourette-like mouse models.
[07:58] The promise of using these models to test potential treatments.
[13:23] Exploring the complexities of identifying tics in mice.
[16:49] How human studies guide mouse model research and the role of sensory motor gating.
[24:42] Discussing the genetic landscape of Tourette Syndrome.
[28:30] The future of drug testing on TS mouse models.
[37:11] Cognitive Behavioral Intervention Therapy (CBIT) and its role in treating tics.
[43:02] How listeners can contribute to the NJCTS Sharing Repository.
Links & Resources:
New Jersey Center for Tourette Syndrome: https://njcts.org/
Dr. Max Tischfield’s Website: http://www.maxtischfieldlab.org/
Remember, each story shared on this podcast brings light and understanding to the diverse experiences within the Tourette's community. Your journey is your own, and it's filled with potential and promise. If this episode resonated with you, I encourage you to like, share, and leave a review to help us connect with more listeners.
Send us a Text Message.
Support the Show.
Send us a text
Support the show
-
In this episode, I had the pleasure of speaking with Ben Mooney, an Occupational Therapist based in Colorado, specializing in insomnia. He has Tourette syndrome and is a certified CBIT practitioner.
We uncover how brain imaging has shed light on the nocturnal activities of our brains, particularly for those with tic disorders. Ben shares practical insights on the importance of consistent wake-up times, the impact of stress on tics, and the role of sleep in our overall health. Whether you're dealing with sleep issues or simply curious about the mysteries of sleep, this episode is packed with valuable information and tips to help you achieve better rest and manage your tics more effectively.
Episode Highlights:
[01:27] - Do people with Tourette syndrome tic in their sleep? Ben explains the science.
[03:35] - Differences in tic frequency during REM and deep sleep stages.
[10:54] - The role of circadian rhythms in sleep and how it affects people with Tourette syndrome.
[14:20] - Impact of technology and blue light on sleep patterns.
[17:02] - Balancing societal demands with the need for proper sleep.
[25:53] - The effects of caffeine on sleep and best practices for consumption.
[30:32] - Resources and advice for finding sleep specialists and improving sleep habits.
[33:31] - The importance of consistent wake-up times and tips for better sleep.
Links & Resources:
· CBT-i Coach: a free app to help track and improve sleep patterns: https://mobile.va.gov/app/cbt-i-coach
· Ben Mooney’s Website: https://mooneywellness.com/
Remember, each story shared on this podcast brings light and understanding to the diverse experiences within the Tourette's community. Your journey is your own, and it's filled with potential and promise. If this episode resonated with you, I encourage you to like, share, and leave a review to help us connect with more listeners.
Send us a Text Message.
Support the Show.
Send us a text
Support the show
-
In this inspiring episode, I sit down with Dr. Jeff Lichtman and his son, Jeremy Lichtman, PsyD, for an intimate conversation about parenting a child with Tourette syndrome. Jeff, a renowned psychologist and visionary leader in special education, shares his personal journey of coming to terms with Jeremy's diagnosis and the challenges they faced as a family. Jeremy, now a successful psychologist himself, reflects on growing up with Tourette's and how his parents' unwavering support and advocacy shaped his life. Together, they offer invaluable insights and advice for parents navigating the ups and downs of raising a child with special needs.
Dr. Jeff Lichtman, Director of Student Mental Health Services and Professor at Touro University, is known for his 30 years of visionary leadership at Yachad, the National Jewish Council for Disabilities, and founding the IVDU Schools. As a psychologist, his expertise includes counseling, leadership, social skills development, and teacher training.
Jeremy Lichtman, PsyD, licensed psychologist and director at Central Therapy, specializes in treating youth and adults with emotional dysregulation, PTSD, Tourette syndrome, anxiety disorders, OCD, and trichotillomania. Certified in CBIT and MDMA-assisted therapy for PTSD, he provides individual counseling, facilitates groups, and presents workshops for NJCTS.
Episode Highlights:
[2:24] Jeremy's earliest memories of his tics and getting diagnosed with Tourette's.
[6:32] Jeff's perspective as a father seeing his son going through this in middle and high school.
[10:25] The challenges Jeremy faced in school due to his ADHD and hyperactivity.
[15:21] How Jeremy used humor as a powerful tool to educate people about his Tourette's.
[19:16] The shift in focus from social concerns to academic performance in high school.
[24:35] Balancing the needs of siblings when one child requires more specialized support.
[33:44] Jeremy's adult support group for parents of children with Tourette's through NJCTS.
[37:03] Jeremy's appreciation for his parents' support and the importance of utilizing available resources.
[38:46] Jeff's closing advice for parents: have faith in your child's resilience.
Links & Resources:
Jeremy's website - https://www.centraltherapynj.com/
Jeremy's NJCTS parent support group: https://njcts.org/event/todays-challenge-tomorrows-strength-a-support-group-for-parents-of-children-with-tourette-or-tic-disorders-2/?event_date=2024-06-12
Remember, each story shared on this podcast brings light and understanding to the diverse experiences within the Tourette's community. Your journey is your own, and it's filled with potential and promise. If this episode resonated with you, I encourage you to like, share, and leave a review to help us connect with more listeners.
Send us a Text Message.
Support the Show.
Send us a text
Support the show
-
On this insightful episode, I sit down with author Michele Turk to discuss her newly released memoir "What Makes Him Tic? A Memoir of Parenting a Child with Tourette Syndrome." As both a journalist and mom, Michele shares her candid journey navigating the unpredictable waters of raising a child with Tourette's - the challenges, misconceptions, hard-won wisdom, and unexpected gifts. Her story offers an authentic, relatable perspective that will deeply resonate with any parent or loved one supporting someone with Tourette's or other neurodivergent conditions.
Michele Turk has worked as a journalist for three decades, covering parenting, health, and education. Her articles and essays have appeared in Bloomberg Businessweek, Parents, Parenting, the Hartford Courant, Elle, USA Weekend, The Washington Post, Brain, Child, and Next Avenue. She has served as president of the Connecticut Press Club since 2015. Turk grew up in Southern New Jersey and currently lives in Connecticut. Michele’s new book “What Makes Him Tic? A Memoir of Parenting a Child with Tourette Syndrome” will be released on June 4.
Episode Highlights:[1:29] - Michele's son Michael's shocking Tourette's diagnosis at 11 inspires her memoir.
[3:04] - Unpacking media's harmful Tourette's stereotypes around coprolalia.
[5:44] - Michael's passion for music boosted self-esteem, managed tics.
[9:50] - Michael's hidden perfect pitch revealed through musical focus!
[11:45] - The overlooked strengths and superpowers of neurodivergence.
[13:30] - Hard lessons on compassionately intervening in bullying.
[18:21] - Michele owns missteps like self-criticism, husband frustrations.
[22:53] - Wise strategies for united parenting: couple time, therapy.
[29:13] - Using online communities and orgs as careful informational lifelines.
[33:45] - The paramount need for self-forgiveness in this arduous journey.
Links & Resources:
Connect with Michele: https://www.micheleturk.com/
Remember, each story shared on this podcast brings light and understanding to the diverse experiences within the Tourette's community. Your journey is your own, and it's filled with potential and promise. If this episode resonated with you, I encourage you to like, share, and leave a review to help us connect with more listeners.
Send us a Text Message.
Support the Show.
Send us a text
Support the show
-
If you're looking to be inspired, you're in for a treat with today's episode of our podcast. I had the privilege of speaking with Daniel Ferron, an extraordinary individual whose journey with Tourette Syndrome is nothing short of incredible. Daniel has navigated life's highs and lows with a condition that was scarcely understood when he was diagnosed in the 1970s. His story is a testament to the power of perseverance and the importance of support. Daniel Ferron is an entertainer, actor, and filmmaker.
Episode Highlights:
[01:20] - Daniel Ferron’s diagnosis in the 1970s by Tourette pioneer Dr. Arthur K. Shapiro.
[04:06] - Early treatment and studying with Daniel’s documentary.
[06:13] - Removed all treatment in his adolescence and had 10 years of tic remission.
[07:30] - Embracing Tourette Syndrome with humor.
[08:27] - When the tics returned.
[10:04] - Daniel’s experience with school in New Jersey.
[11:09] - Family support was paramount to his success.
[13:27] - Finding his calling in entertainment.
[15:45] - The advancement of Tourette advocacy leading to understanding.
[17:30] - Going to the movies and getting into the entertainment business.
[20:05] - Daniel’s documentary “My Life, My Story, My Tourette’s”.
[23:40] - Advice for the younger Tourette community.
[27:03] - Advice to disconnect.
[28:50] - Clarity and sense of self naturally improves as you age.
Links & Resources:
Daniel Ferron's Documentary: "My Life, My Story, My Tourette's"
New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/
Remember, each story shared on this podcast brings light and understanding to the diverse experiences within the Tourette's community. Your journey is your own, and it's filled with potential and promise. If Daniel's story resonated with you, I encourage you to like, share, and leave a review to help us connect with more listeners.Send us a text
Support the show
-
In this episode, I had a compelling conversation with Dr. Angie Landeros-Weisenberger, an Associate Research Scientist at the Yale Child Study Center. We discuss the current state of research and the latest breakthroughs in treating tics and co-occurring conditions such as OCD and depression. Dr. Angie's expertise and passion for research left me both inspired and hopeful for what's on the horizon in patient care.
Episode Highlights:
[01:30] - Dr. Angie’s history of research.
[02:39] - Innovative treatments on the horizon.
[06:10] - Exploring genetic mysteries of tics.
[09:37] - Breaking the habit loop.
[13:33] - The future of wearables.
[16:18] - Trichotillomania research and why it’s not a tic disorder.
[18:48] - Gender bias in tic diagnosis.
[20:46] - A lifetime with OCD and tics.
[24:33] - Selective serotonin reuptake inhibitors (SSRIs) treatment for OCD.
[27:09] - Science is not set in stone, changes will occur with more research.
[27:25] - Advances in research of tools, such as ketamine, for treatment-resistant depression.
[31:34] - Very promising things are coming through research and studies.
Links & Resources:
Yale Child Study Center: https://medicine.yale.edu/childstudy/
New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/
I want to remind all our listeners that each episode we share is a stepping stone to better understanding the intricate world of Tourette Syndrome and related disorders. If you've enjoyed today's episode, rate us and leave a review. Your feedback not only supports the show but also helps us reach and educate more people like you.Send us a text
Support the show
-
Today I am joined by Slayton Cooper, a high school senior valedictorian and youth ambassador for the Tourette Association of America. Slayton is a passionate advocate for Tourette Syndrome, neurodiversity, and related conditions. We explore what it means to truly embrace our unique neural landscapes in school and at work.
We explore the positives and negatives of labels, the importance of advocating for your needs, and finding your most authentic self. Slayton offers profound wisdom well beyond his years on self-acceptance, resisting judgments, and seeing the beauty in our differences. His message of empowerment for those with Tourette Syndrome and similar conditions is truly uplifting.
From personal struggles to triumphant advocacy, this conversation unveils the importance of understanding, acceptance, and empowerment within the neurodiverse community and beyond. Don't miss this insightful journey into the heart of neurodiversity.
Timeline Highlights:
[01:20] What does neurodiversity mean?
[04:29] Advocating for inclusion.
[07:39] Challenges in employment.
[11:30] Stigmas in the workplace.
[16:43] Navigating standardized tests.
[20:23] Balancing goals and ambitions with neurodiversity.
[23:00] Tools and resources
[31:54] Suppressing tics.
Links & Resources:
New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/
Thank you for tuning into this enlightening conversation on neurodiversity. If you've found resonance or inspiration in our discussion, I encourage you to rate, follow, share, and review our podcast. Your support helps us bring more stories like this to light, empowering others to embrace their unique selves fully.
This episode is dedicated to and in memory of, Patricia Phillips. Rest in peace, Pat. May your memory be a blessing, always.Send us a text
Support the show
-
In this episode, I share a deeply personal journey that hits close to home for many of us navigating the complexities of parenting a child with Tourette Syndrome (TS). Alongside the insightful Rena and Maggie LaSalle, we delve into the world of occupational therapy (OT), Cognitive Behavioral Therapy (CBT), and the power of emotional intelligence. Our discussion centers on their son, Liam, and the innovative strategies they've embraced to support his growth and well-being. This episode is a beacon of hope and a toolkit of strategies for parents facing similar challenges, underlining the importance of understanding, patience, and continuous learning in the face of TS.
Timeline Highlights:
[01:47] Exploring Liam's occupational therapy journey.
[03:22] How cognitive behavioral therapy aids Liam.
[05:02] Focusing on Liam's emotional growth.
[09:42] The importance of emotional intelligence in children.
[11:28] Strategies for navigating stress and challenges.
[15:59] Finding what works best for Liam through trial and error.
[18:07] Adjusting routines for Liam's needs.
[21:01] Creating a supportive environment for Liam.
[26:49] Liam's transition to a supportive educational setting.
[30:07] Seeking the best medical and therapeutic advice.
[33:58] Lessons and advice from Liam's journey.
Links & Resources:
•New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/
If you found this look at occupational therapy for Tourette’s helpful, don’t forget to subscribe, rate, and review! It really helps spread the word.Send us a text
Support the show
-
We continue our fascinating deep dive into the winding history of Tourette Syndrome. Dr. Howard Kushner joins me again to discuss the early focus on coprolalia, psychoanalytic theories blaming patients, and the heroic efforts of advocates like the Shapiros to reframe TS as biological. We also touch on the importance of support groups, promising new interventions, and predictions for the future.
Dr. Kushner guides us through the shifting perspectives on TS, from the bleak early views encapsulated by the phrase "once a ticker, always a ticker," through the era of psychoanalytic blame, to our current understanding of TS as a multifaceted neurodevelopmental condition. Drawing from his vast research and his 1999 seminal work, "A Cursing Brain? The Histories of Tourette Syndrome," we examine the complex journey of TS diagnosis, the stigma attached to symptoms such as coprolalia, and the importance of a supportive community and multidisciplinary care for those affected.
Timeline Highlights:
[01:16] The emphasis on coprolalia in early TS research.
[02:51] Tic reduction when engrossed in an activity.
[05:04] The Tourette Syndrome Association's advocacy.
[07:12] The power of youth support groups for TS.
[09:22] Reframing TS as biological - Shapiro's contributions.
[11:42] Predictions for the next 50 years of TS research.
[13:30] The risk of over-medicalizing TS identities.
[14:23] Emerging interventions like TMS and medicinal marijuana.
[15:40] Appreciating Dr. Kushner's historical research.
[16:05] The link between left-handedness and TS.
[17:22] Advice for living well with TS.
[19:04] The importance of youth camps and support groups.
Links & Resources:
•A Cursing Brain: The Histories of Tourette Syndrome by Dr. Howard Kushner.
•New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/
If you found this look at the history of Tourette's helpful, don't forget to subscribe, rate, and review! It helps spread the word.Send us a text
Support the show
-
In this episode, we embark on the first of a two-part series, diving into the history of Tourette Syndrome (TS) with Dr. Howard Kushner, a renowned expert in the history of neurology and medicine. We explore the evolution of TS from its earliest documentation, predating the 19th century, through the significant contributions of Georges Gilles de la Tourette, and its progression across medical and psychological models throughout the 20th century.
Dr. Kushner guides us through the shifting perspectives on TS, from the bleak early views encapsulated by the phrase "once a ticker, always a ticker," through the era of psychoanalytic blame, to our current understanding of TS as a multifaceted neurodevelopmental condition. Drawing from his vast research and his 1999 seminal work, "A Cursing Brain? The Histories of Tourette Syndrome," we examine the complex journey of TS diagnosis, the stigma attached to symptoms such as coprolalia, and the importance of a supportive community and multidisciplinary care for those affected.
Timeline Highlights:
[02:00] How Dr. Kushner first became interested in researching Tourette's Syndrome.
[5:10] Dr. Kushner's continued involvement in the TS community.
[7:14] How the book on Tourette's Syndrome has held up over time.
[13:41] Early psychoanalytic theories blaming patients and parents.
[17:08] The early history of Tourette Syndrome in the 1800s.
[20:03] The disturbing early anti-Semitism in TS research.
[22:20] The focus on coprolalia in the early characterization of TS.
[23:57] The notion that childhood sexual conflicts caused TS.
[24:35] Tic reduction when engrossed in an activity - an early observation.
[26:46] The Tourette Syndrome Association reframing TS as biological.
[28:16] The importance of youth support groups for TS.
[30:36] The heroic contributions of Shapiro in advocating for TS.
[32:10] Early evidence that medications could treat TS.
[33:09] Predictions for the next 50 years in TS research and treatment.
[35:18] Emerging interventions like DBS brain stimulation for TS.
[37:13] Advice for living well with TS.
Links & Resources:
•A Cursing Brain: The Histories of Tourette Syndrome by Dr. Howard Kushner.
•New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/
Stay tuned for part 2 of this interview on March 12 as we go further into the history of TS! If you found this look at the history of Tourette's helpful, don't forget to subscribe, rate, and review! It helps spread the word.Send us a text
Support the show
-
In this episode, I speak with occupational therapists Shannon Floyd and Jan Rowe about their expertise helping both children and adults with Tourette Syndrome. We have an enlightening discussion around how occupational therapy can empower those with tics and Tourette's to live full, uninhibited lives.
Shannon and Jan outline the evolution of using a more cognitive behavioral approach compared to traditional sensory techniques. We also explore the difference between organic and functional tics, managing sensory issues like clothing textures, and critical emotional regulation skills.
If you or a loved one experiences challenges from TS that hinder engagement in meaningful occupations, this episode will expand your understanding of how OT can help.
Starting in 2024, there will be an "OT Compact Agreement" where about 36 states are collaborating and people who live in those can find an OT who is part of the compact and work with them. This can help people in rural communities find therapists across state lines, who are knowledgeable in TS and CBIT
Timeline Highlights:
[01:05] The shift from sensory strategies to CBT for treating tics.
[03:01] Heightened internal awareness in TS patients.
[04:03] Learning competing responses and emotional regulation young.
[13:44] Clothing accommodations for sensory issues.
[16:07] Distinguishing functional tics from organic TS.
[18:55] High treatment success rate for functional tics.
[22:48] Recognizing personal warning signs of frustration.
[25:21] OT meets needs beyond talk therapy.
[29:40] Allowing telehealth across state lines with license portability.
[32:06] Finding a TS-experienced OT in your area.
Links & Resources:
•Tourette Association of America Therapist Directory: https://tourette.org/resources/find-a-doctor/
•Learn about OT Compact for telehealth: https://otcompact.org/about/
•New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/
If you found this look at occupational therapy for Tourette’s helpful, don’t forget to subscribe, rate, and review! It really helps spread the word.Send us a text
Support the show
- Näytä enemmän
