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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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