TSC Talks!

Jackie Woodside, certified (CPC, LICSW) and a best-selling author, TEDx speaker, radio and television personality and seminar leader who is passionate about expanding the edge of human potential, kindly granted TSC Talks this interview. She was willing to answer the more difficult questions about her past; overcoming much adversity to get to where she is today. Jackie also happens to be a special...

In this episode, TSC Talks Audio Editor Interviews grizzled TSC veteran, Jill Woodworth on what happened, what she learned, who she met and what's next. How understanding the impact of trauma has been the key that unlocked the doors to the integration of past experience, with present reality and how finding a way to have some quality of life in the midst of much uncertainty has been the motivating...

Marlo Grolnic, TSC Mom, past chair of the Tuberous Sclerosis Alliance of New England and previous guest on TSC TALKS in September 2018, takes time out of her day to give us an update on how her son's adjusted to an out of district placement he had just started when we spoke in the fall. She elaborates on how this adjustment has been for the family, as well as describing improvements in TAND relate...

From a mismanaged initial TSC diagnosis in her daughter to struggles getting treatment for Infantile Spasms, challenges finding an adequate setting for brain surgery, educational and behavioral issues as well as personal and family impact, Heather Little has experienced much of what TSC care and management involves. She shares honestly in a clear & articulate manner that despite repeated obstacles...

Danny graciously put down one of his many "health hats" and came on the podcast to share his wisdom and deep knowledge of the inner workings of the medical industrial complex, aka healthcare system, from the many hats he's worn within the healthcare system across his lifetime. In turn, TSC management across a lifetime requires one to wear many "hats" as well. We discussed transitions and autonomy...

In this fascinating and inspiring episode, Caroline Ramirez, TSC Mom & Licensed Professional Counselor discusses the impact of different types of trauma, shock trauma & developmental trauma, and how this is relevant to TSC. She discusses how we as parents can work with our children, to mitigate traumatic experiences which are often a part of TSC management and care and shares examples from her per...

Ph. D. Psychotherapist, Writer, and Special Needs Mom, Ginger Sullivan, gives us some of her insight, wisdom, and humor gleaned from over 26 years as a therapist in the D.C. area. We discuss the therapeutic process and the exceptional challenges to the psychological well being of special needs parents/caregivers managing chronic ongoing stress. She details how this chronic stress can impact our re...

Listen to this articulate and inspiring young lady, Saaim Ali, as she gives us a gripping inside look at the experience of having epilepsy. From diagnosis at age 7, thru the current day as a computer science major near Buffalo, NY, she discusses how she came to accept her diagnosis, difficulties in school, overcoming mental health challenges related to epilepsy, interacting with doctors as she tak...

Writer, Advocate, TSC Mom, Rebecca Gaunt shares her experience of TSC with her son Connor. She highlights her involvement with Cannabis legislation in GA, after finding it the only treatment adequate to gain control of devastating drop seizures. She shares the frustrations obtaining Cannabis for medical use in GA, as well as the incredible seizure control gained. She also compares effectiveness of...

In this episode Rebecca shares her challenging experiences and incredible advocacy as a TSC Mom, getting an accurate diagnosis of certain TSC manifestations such as seizures, including infantile spasms and autism spectrum disorder. She gives multiple examples of how frustrating managing TSC can be when there are multiple disconnects among doctors and other professionals, even at the same instituti...

Hillary Savoie, writer, advocate, consultant, and most importantly, mother of Esmé, a medically fragile, developmentally delayed child, discusses the impact of PTSD on parents, Her recent article in Romper.com delves into this crucial topic as she explores the impact of PTSD with multiple parents. Our conversation centers around this misunderstood topic, the barriers to seeking help, the damage to...

In this brief episode, MaryEllen Lacy, 22, an adult living with TSC, gives me an update on her current living situation after moving out last April to Shared Living. I recently interviewed her caregiver Claire in Episode 18. MaryEllen fills us in on how it's going with Claire, as well as at her new program, HMEA. She details her experience with work, volunteer, and social activities as well as oth...

Tarra Hassin gives us an inside look at her experience with her son Colin's TSC diagnosis at 10 weeks old with seizures and how she started to notice "strange things" happening. and that led to IS diagnosis and treatment. We also discuss TS Clinic in Denver, family impact, frustrations and challenges in the healthcare system, and education system. Her advocacy leading to legislation in NM to chang...

A discussion with Shannon Grandia, wife, mother, first-grade teacher, TS Alliance Volunteer, and Advocate! She shares her experience over the last 19 years with her children, Rylee, Jake and Luke, all affected by TSC as well as spouse Rob who is also affected. Shannon is an incredible human being and the love she has for her family truly permeates this discussion. We chat about diagnoses, manifest...

A day in the life of Shared Living Provider, Claire Despres. We discuss the ins and outs of shared living; the program itself, the process of finding a client, the role of a good case management team, and then we get a glimpse at a day in the life of her client, MaryEllen Lacy. MaryEllen is a young adult living with TSC who has been on the podcast herself. Become a supporter of this podcast: https...

In this episode, I go local in this discussion of special education with past school committee member and experienced special needs mother, Stacey Jackson. We go in-depth on Stacey's hands-on experience advocating for her daughter, from early intervention to high school and beyond, her experience with mediation, working with your child's IEP team collaboratively for a successful inclusion as well...

HOPE WINS. In the words of new TSC Mom Meghan Wilson, "Live the Moments". Meghan talks about her baby Cameran's diagnosis at 2 months, getting seizure control, ketogenic diet, the MGH TS Clinic, and family support with TeamCamBam. #TeamCamBam was made up of multiple family members all running for Cameran, and TS Alliance as part of TeamTSC , in the recent Marine Corp Marathon! Team Cam Bam raised...

Previous podcast guest, Dorina Leslie, Interviews host Jill Woodworth on her experience with TSC in her children, impact personally and how this led to her involvement with Marine Corp Marathon TS Alliance, Team TSC as well as origins of TSC Talks podcast, development and motivations. Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support .

Kristina Hansson, Occupational Therapist of 25 years discusses her motivation for becoming an OT, Importance of Early Intervention programs, the process of requesting services, her diagnosis of Neurofibromatosis, and much more! Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support .

TSC Mom, Mary Comeau shares her nail-biter of an experience with TSC. From potential TSC diagnosis at 20 wks pregnancy, the start of seizures, difficulty with seizure control, keto diet, brain surgery, Early Intervention, Special Ed Teachers, and some success with CBD Oil treatment with TS Clinic at MGH, Boston, MA Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--166...

A conversation about Adriana's experience with her son Nicky who is 20 and severely affected by TSC and the incredible project she's started called Nicky’s Gardens of Hope. "The pilot project will build our first facility, one that can truly help families with children and adults like Nicky. We will build a permanent home that gives their loved ones peace of mind that their children will be taken...

Woody and I discuss his background and experience, the role of a school psychologist, how parents/students affected by TSC can best make use of services of a school psychologist, the use of labels, advocates, working as a team. Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support .

Renée and I go in depth into her journey with her son Aaden who is non-verbal with TSC, diagnosis to current day. Renée gives perspective from Canada on managing TSC, from diagnosis, brain surgery to current day. Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support .

Marlo discusses the weight of a TSC diagnosis and all it's implications. From diagnosis during pregnancy to behaviors and school related issues, seizure frustrations, med management, healthcare professionals and more. She narrates the difficulty of living with the uncertainty that can be a part of TSC management and how the family works together to cope. Become a supporter of this podcast: https:/...

In this episode, I interview Dorina Leslie, mother of Justin Leslie regarding her experiences with TSC diagnosis as well as mental health issues, and finding one's "True North". Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support .