The UpTic

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/

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In this episode, I interviewed another TS advocate, Jillian Firenze. Jillian has been a coach and a nurse at the annual NJCTS Tim Howard Leadership Academy. In this episode, we discuss her childhood growing up with TS (and having siblings who also have TS), her work as a nurse, what inspired / motivated her to become a nurse, what tic attacks are and how to handle them, and general insights on supporting youth with TS.

Episode Highlights:
[00:45] Finding her calling in nursing after caring for sick family members.
[05:09] Supporting her younger brother who was also diagnosed with TS.
[08:38] Struggling to accept tics until having a breakthrough at the Academy.
[10:32] Describing intense tic attacks and compassionate ways to respond.
[15:31] Finding moments of self-care while coaching high-demand roles.
[19:38] The tricky balance between supporting and triggering someone's tics.
[22:43] Battling recurrent depression alongside TS in adulthood.
[25:08] Uplifting others to embrace their true selves and never give up hope.

Links & Resources:
New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/

Remember, your story is powerful, and sharing your experiences can be the guiding light for someone else's journey. If you enjoyed this episode, please rate, follow, and share 'The Uptick' with others. 

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In this episode, I have an illuminating discussion with Callum deQuevedo about his life-changing experience undergoing deep brain stimulation (DBS) surgery to treat his severe Tourette Syndrome (TS). Callum shares the incredible story of his journey to DBS, from exhausting medications and therapy options, to making the decision for surgery, going through the procedure and recovery, to the transformative impact it has had on reducing his tics and self-injurious behaviors. While not a cure, DBS has given Callum a new lease on life. This powerful testimony sheds light on an emerging treatment option that could help others find relief.

Episode Highlights:
[01:27] Callum emphasizes DBS is not a cure but has significantly reduced his tics.
[02:37] Callum details the lengthy DBS candidacy process.
[05:30] Mental health criteria for getting DBS.
[07:06] The process of DBS surgery.
[09:27] Remote monitoring of Callum's DBS device.
[10:58] Follow-up surgeries required.
[12:38] DBS reduced Callum’s motor tics by 70%.
[14:15] How DBS has lessened the burden of TS.
[15:30] DBS has saved money caused from severe tic episodes.
[16:25] How Callum enjoys going to the movies.
[18:10] Being triggered by each other’s tics.
[19:30] DBS has improved Callum's hand tremors and handwriting.
[20:23] Mental health benefits of DBS.
[21:33] Limitations after DBS, including high-contact sports and metal detectors.
[23:54] Callum’s future college and career plans.
[25:04] Impressed by Callum's deep knowledge of tic blockers.
[28:54] Finding a TS therapist.
[30:00] Callum’s one piece of advice for people with TS.
[31:40] Post-DBS, Callum needs less accommodation at school now.

Links & Resources:
New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/

Remember, your story is powerful, and sharing your experiences can be the guiding light for someone else's journey. If you enjoyed this episode, please rate, follow, and share 'The Uptick' with others. 

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I had an enlightening discussion with Mason, a fellow advocate in the Tourette's community, about the complex intersectionality between TS and other identities. We explored the stigma surrounding coprolalia, the financial barriers to Tourette’s advocacy, and the dangers of gatekeeping Tourette’s diagnoses. Our conversation shed light on the diversity within the TS experience.

Episode Highlights:

[02:22] Kicking people with coprolalia out of the Tourette's community.

[04:16] The camp video that emphasized Tourette’s is not about swearing.

[06:12] Navigating intersectional identities beyond just having Tourette’s.

[07:39] The heavy financial burden of Tourette’s advocacy.

[10:08] Unpaid labor expected in disability advocacy communities.

[12:53] Respecting gender diversity at Tourette’s summer camps.

[14:31] The problem with accusing people of “faking” their tics.

[15:56] Tourette’s manifestations viewed differently across gender.

[17:53] Pretty privilege when it comes to tics being seen as “cute”.

[19:32] Who is really behind the Tourette’s police?

[21:01] Supporting conflicting access needs in the TS community.

[22:50] Barriers to medical transition for trans people with disabilities.

[25:00] Mason’s experience when coprolalia tics first emerged.

[31:32] The importance of visible TS role models across the spectrum.

Links & Resources:

New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/ 

Remember, your story is powerful, and sharing your experiences can be the guiding light for someone else's journey. If you enjoyed this episode, please rate, follow, and share 'The Uptic' with others. 

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Join me as we explore the diverse intersection of Tourette Syndrome, culture, and identity with Michael Chichioco, a Filipino American medical student with a powerful story. In this episode, Michael opens up about his life with Tourette's, shedding light on the unique cultural challenges and the journey to understanding and acceptance. Tune in for an enlightening conversation that delves into the heart of living with Tourette's in a multicultural setting.

Episode Highlights:

[01:11] - Meet Michael Chichioco and discover the pivotal role of culture in his Tourette Syndrome journey.

[01:53] - Michael's personal battle with Tourette's – the early signs, diagnosis struggles, and cultural barriers.

[04:20] - A deep dive into childhood memories, understanding Tourette's, and family dynamics in different cultures.

[08:43] - Exploring the diverse reactions to Tourette Syndrome and the complexities within families.

[14:29] - The challenge of support and advocacy in varied communities and the significance of cultural awareness.

[17:35] - Discussing the urgent need for more diverse voices and perspectives in the Tourette community.

[23:41] - The power of representation: How diverse role models can reshape Tourette advocacy.

[28:07] - Uncovering the geographical and cultural diversity in the Tourette world – why understanding matters.

[30:14] - Michael's heartfelt advice for those living with Tourette Syndrome: Embrace and trust yourself.

Links & Resources:

●       Tourette Association of America, Northern California & Hawaii Chapter: https://tourette.org/chapter/ca-no/ 

●       New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/ 

Remember, your story is powerful, and sharing your experiences can be the guiding light for someone else's journey. If you enjoyed this episode, please rate, follow, and share 'The Uptick' with others. 

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Join me as we unwrap the shared lives of Nicole and Ben Stark, both professionals navigating life with Tourette syndrome. In this heartfelt episode, we dive into the quirks and comforts of being in a relationship where both partners have Tourette. From amusing sugar packet fidgets to the support system they've built, get ready to be charmed and enlightened by their journey together.

Episode Highlights:

[00:36] - Welcome to 'The UpTic': Meet Nicole and Ben Stark, a couple defining what it means to live and love with Tourette.
[01:19] - The perks and trials of marriage when both partners have Tourette's.
[02:28] - The art of support: Ben and Nicole discuss how they help each other through the tough days.
[05:10] - Navigating the spectrum of co-occurring conditions and the importance of understanding each other's body language.
[07:51] - Managing work and vocal tics: the Stark's approach to focus and quiet spaces.
[08:46] - Entering the dating world with Tourette's: Ben and Nicole share their heartfelt advice on love and acceptance.
[10:34] - New parents to Anthony: the Starks talk about the joys and challenges of parenthood.
[16:24] Tourette's, self-esteem, and bullying.
[20:59] Tourette's, relationships, and self-discovery.

Links & Resources:

New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/

Remember, your story is powerful, and sharing your experiences can be the guiding light for someone else's journey. If you enjoyed this episode, please rate, follow, and share 'The UpTic' with others. 

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Today we dig into the world of Tourette Syndrome (TS) and its management through Comprehensive Behavioral Intervention for Tics (CBIT). Our guest, Dr. Jeremy Lichtman, a licensed psychologist specializing in Tourette patients, sheds light on the myths and truths surrounding TS. We explore the intricacies of CBIT, debunking common misconceptions, and understanding its role as a transformative tool rather than a cure. Whether you're directly affected by TS, a caregiver, or just curious, this episode offers valuable insights and hope for managing Tourette Syndrome.

Key Moments:

- [00:00] Dr. Lichtman discusses the common misconception of CBIT as a cure for TS.
- [01:17] Dr. Lichtman simplifies CBIT as a 'tool, not cure' for TS.
- [04:48] Deep dive into CBIT: the principles, components, and how it functions.
- [10:38] Real-life examples and success stories in managing TS with CBIT.
- [17:02] Understanding the unique challenges of vocal tics and adult patients in CBIT.
- [24:06] The journey of a patient mastering CBIT and its long-term impact.
- [30:14] Addressing misconceptions about CBIT and identifying ideal candidates.
- [35:20] Differentiating between TS and its comorbidities for effective treatment.
- [42:28] Dr. Lichtman reflects on the power of conversation and education in TS management.

Links & Resources
- New Jersey Center for Tourette Syndrome and Associated Disorders: https://njcts.org/ 
- Dr. Jeremy Lichtman's Practice Information: [Website Link]
- Comprehensive Overview of CBIT: [Resource Link]

Thank you for tuning into The UpTic. If you found this episode insightful, please consider rating, following, and sharing our podcast. Your support helps us reach and empower more individuals. Remember, you're not alone in your journey with TS. Let's continue to stretch the boundaries and live our best lives!

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In today's episode, I sit down with the incredible Aidy Smith to discuss our personal experiences with Tourette syndrome. From the challenges of getting diagnosed at a young age to confronting the stigmas we've encountered, we share our most personal stories and insights. Listen in as we unravel the complexities of living with Tourette and explore why some of us even view it as a superpower.

Links & Resources:
- NJCTS: https://njcts.org/ 

If this episode resonated with you, I'd be grateful if you could rate, follow, and share it. Your feedback means the world to me, so please leave a review. Together, let's foster understanding and compassion in our community.

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Welcome to the series premiere of The UpTic! Today we’ll dive deep into life with Tourette Sydrome. From the challenges and the stigmas to the unique advantages it can bring to your life. Trust me, whether you're dealing with Tourette's or know someone who is, you won't want to miss this one. We're also getting into the power of advocacy and why it's crucial to open up about co-occurring conditions like ADHD. Strap in; it's going to be a meaningful ride!

Key Moments:

[0:00] Kick-off: Setting the Stage for an Eye-Opening Journey  

[4:13] Unveiling the Mask: The Reality of Tourette's  

[9:33] Amplifying Voices: The Power of Tourette's Advocacy  

[15:19] Double-Edged Sword: Tourette's Meets ADHD  

[20:04] Breaking the Silence: Advocacy Unplugged  

[25:16] Celebrating Neurodiversity: The Final Frontier of Advocacy

Links & Resources:

- NJCTS: https://njcts.org/ 

If you enjoyed this episode, follow the podcast, share it with your friends, and drop a review. It means the world to me, and it helps other people find the show. Until next time, keep being unapologetically you!

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Welcome to 'The UpTic' a podcast that dives deep into the world of Tourette syndrome (TS). Just like an iceberg, most see only the tics of TS, but there's so much more beneath the surface. From the unique talents and challenges of those with TS to the diverse experiences within our community, we explore it all. Whether you have TS, advocate for the community, or are simply curious, this is your window into our world. Our episodes are filled with compelling interviews, expert insights, personal stories, and the latest advancements in TS research. We go beyond just TS, sharing stories from the LGBTQ+ community, various ethnic and cultural groups, and adults living with TS. But, 'The UpTic isn't just about education – it's about inspiring action, breaking down stereotypes, and building a world where everyone can tick freely. Join us in this movement to change the narrative around Tourette syndrome and neurodiversity. Follow or subscribe now, and together, let's make a difference!

Brought to you by:  NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) 

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