TSC Talks!

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 as it relates to moving from pediatric care to adult care in the medical/mental health/social services system. Like an elephant in the room, this man truly has seen the whole elephant. Danny took the time to talk to me about my experience with the many facets of TSC care over the last 22 years and validate the challenges, exclaim over the disconnects, yet also share how it's possible to find ways to work together. He has vast experience as a patient/caregiver, activist, writing, speaking, and advising people in their health journey. Danny is MPH, RN, CPHQ, a nationally recognized nurse leader and advocate for family caregivers and much more. His website is www.health-hats.com .

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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 personal experience and successes with her daughter who had brain surgery at 15 months of age and had postoperative partial paralysis. She concludes by offering multiple practical suggestions & techniques for applying these practices in our own situations. As a body-oriented psychotherapist, she looks at how visceral reactions relate to mental health, as well as emotions and thoughts. Both of her primary ways of working were influenced by the research of Stephen Porges, who wrote the Polyvagal Theory.

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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 relationships with our children, ourselves, and our partners. Finally, she shares some DIY tips on staying psychologically healthy, the use of medications in treatment and the range of treatment options available. I was grateful to hang out briefly via audio with my "old" college friend and glean some gems from the goldmine of her vast lived and learned experience.

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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 takes responsibility and utilizes discipline and hard work to meet the many challenges a diagnosis such as epilepsy can present. She details how much it means to be recognized for accomplishments, not getting caught in a downward spiral of depression, seeking mental health support and finding joy and meaning in her life. Today, she uses her experiences overcoming the many frustrations of the "invisible" disease epilepsy to inspire and help others in her college setting.

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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 Cannabis with and without CBD based FDA approved medication Epidiolex. Additionally, Becky poignantly shares challenges managing mental health issues in relation to TSC,, family impact and support, educational issues and much more.

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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 institution, to whom we must turn for help. Rebecca's perseverance in the face of incredulous situations is phenomenal. She also dips into the family impact, coping and her writing. The depth and quality of REbecca's poignant and eloquent writing helps us see the reality of living with both joy and sorrow, on a daily basis, inherent in the TSC journey

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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 relationships the need for the medical community to be cognizant and responsive, and much, much more. Hillary shares how she had to confront her own PTSD in order to make the necessary connections with those impacted to adequately engage and start to bring this hot-button topic to press. Hillary continues to raise awareness and gives multiple suggestions on how we can start to address this topic in our own communities and with those close to us.

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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 other things on her mind. I will mention that MaryEllen is on the autism spectrum and has dealt with PTSD in the course of her lifetime. I'm highlighting both PTSD and Autism as well as PTSD in caregivers among the TSC population as well as elsewhere.

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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 change the use of restraint in school settings as well as the need for more education and awareness of ABA therapy. Tarra shares her philosophy of acceptance and attitude while on this journey with TSC.

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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, manifestations, treatments, family impact and more. Shannon is able to truly understand the importance of acceptance and living in the present. Her choice to focus daily on the positive and cultivate joy in her family is truly inspirational and motivating. While acknowledging the extreme challenges and uncertainty involved in managing this disease she continually expresses gratitude for all the many ways the family has been fortunate, outlining how teamwork, organization, church and community support, TS Alliance involvement, have all contributed to this beautiful life that Shannon and her family live one day at a time.

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