TSC Talks!

Rob Grandia is an adult with TSC and father of 3 children affected by TSC. In this episode, he gives an inside look at not only receiving a diagnosis of TSC in his children but also finding out as an adult that he also is affected. We discuss the various manifestations experienced by his children throughout these last 18 years, and how the family was able to find adequate treatment locally. From partial complex seizures as the diagnosing symptom in his oldest daughter to reducing seizures from 80-90 per day to 1-2 per week on an modified Atkins diet for his son, this family has seen a lot. From the early days where seizure management was the primary goal to current day dealing with behavior challenges, what is evident is the overriding commitment and devotion of Rob and Shannon to providing stability, humor and mutual support for each other and their children. Steadfastly devoted to each other as well as the cause of TSC awareness, research and finding a cure, they have found ways to cope, find joy & humor and help others throughout this journey. Rob's work as a board member and regional coordinator with the TS Alliance has provided much purpose and passion as he makes it a priority to be available to help as many other Dads, individuals and families as possible. In his words, "I am a husband and father to 3 amazing kids. Tuberous Sclerosis plays a huge role in my life and I am advocate for research and development to find a cure. Mostly, I love my family." I personally am incredibly inspired by Rob, Shannon and their entire family as they continue to rise up to each new challenge, despite facing grief and loss, push forward and hope that they can use their lived expertise to provide hope & inspiration daily to as many people as possible.

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Max Piltz, brother of Nicky, the inspiration for Nicky's Gardens of Hope, gives his 2 cents on life with a nonverbal sibling who is significantly impacted by Tuberous Sclerosis Complex and Intellectual Disability. Max hits it home with his honest and matter of fact answers to questions posed by his mother, Adriana Piltz, Founder & CEO of Nicky's Gardens of Hope. You will be touched by this short episode highlighting sibling impact, resilience & teamwork. NGOH is a one of a kind, a revolutionary new program designed to meet the profoundly unmet need for a permanent home for IDD adults with wrap-around services, supporting the health, wellbeing & longevity of the IDD individual across a lifetime.

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Adriana Piltz, is Founder & CEO of Nicky's Gardens of Hope (NGOH). She came on the podcast back in October 2018 to give us an introduction and explanation of this one of a kind project. In this episode she gives us an update, discussing what's happened since we last talked, and why she is even more excited & passionate than ever about this unique opportunity. Speaking from personal experience, having left a wall street career to start this project, Adriana knows that the gaps in the long term systems designed to support our loved ones after we are gone are only widening as individuals with IDD & Autism approach "the cliff" at age 21 and the services that once supported them start to fall away. She's committed to addressing this crisis due to lack of funding and constantly changing government requirements and NGOH is committed to providing long term care that integrates work therapy, training for employment, community engagement, recreation, and more to allowing for a quality of life for not only Nicky, but others like Nicky. Adriana wants to know, like so many of us that care for those affected by IDD & Autism, that after we die, our loved ones who are valuable individuals and deserve access to programs and opportunities that give them a chance to work, have community, and that support their needs over the course of their entire lifetime. She details why NGOH is unique, with a two corporation model combining a charity created to build safe, permanent homes for IDD & Autism affected adults & provide support services for their families with a Type B corp creating enduring business enterprises that provide funds to support the charity. Adriana and her team are well on their way to making this project a reality and have events already on the calendar in August with an IDD/Autism get together in NYC on 8/17 and an IDD/Autism parent/caregiver/family support group phone call on 8/20 to give opportunities to connect, share our stories, struggles and feel less alone. Adriana is a true visionary and has assembled a team of like-minded individuals, with financial & investment expertise, healthcare information management experience, nutrition and therapy expertise, and more to ensure the success of this revolutionary new model. Contact the team at NGOH for more information and/or to get involved! [email protected] or visit https://nickysgardensofhope.com.

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In Part 2, Cecilia talks about coping, working out, overcoming a food addiction, feeling like everything is on her shoulders and dealing with burn out. She also discusses getting unsolicited advice, dealing with SSI uncertainties, pharmacy issues and her deep concern for her African American son with challenging TAND behavior issues. "We all come in different shapes & colors" Yet she shares how multiracial issues can be even more challenging when managing a TSC diagnosis. Despite it all, her faith has been a refuge and her unwavering determination to help her son and family are evident throughout; "I try to look at the bigger picture. At the end of the day, it's like, this is who I am. This is what our family is, and, you know, you fight harder." https://tsctalks.com

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Cecilia Pratt, reached out via Facebook to share her lived experience of a TSC diagnosis in her son and former husband. She clearly depicts how it felt to receive this heavy diagnosis download in a dermatologists office, based on skin symptoms and delivered with minimal compassion and little information, back in 2005. From here they found a TS Clinic in CA , but again Cecilia was not given the answers she needed about managing TSC and was extremely discouraged. Moving from CA to Baltimore MD, she was finally able to find a clinic and team that was able to offer hope at the Kennedy Kriger Institute. In Part 1 Cecilia gives us a moving account of the inner experience of a mother continually swimming upstream and trying to stay afloat with little support while managing some of the fiercest manifestations TSC can dish out. Intractable seizures, extreme behavior challenges, and IEP non-compliance litigation are just some of the struggles she outlines over the course of these episodes. Cecilia refuses to allow these tidal waves of TSC management keep her down and her forthright accounts of her lived experience are both painful and inspiring. These episodes are powerful, particularly if you've ever felt frustrated with getting support and solid information, struggled with relationship and family misunderstanding and felt alone and isolated. Thanks, Cecilia for your willingness to share from some of your most vulnerable moments to give voice to what many of us have felt as we attempt to maintain a quality of life while dealing with the constant demands of TSC care and management.

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Jaye Isham, VP of Communication Strategy @ TS Alliance, and beloved TSC community member shares from his work and lived experience in Part 2 of this 2 part episode. A quote that says it all: "Yeah, you know, and I'm very lucky that I allow myself to feel the pain and the heartache and all of those things from the families. I mean, I am never going to truly understand, you know what it's like to have a child with TSC or to have it myself but I have so much empathy, and it's made me such a much better person." That's Jaye, in a nutshell, and his empathy drives his work. He fleshes out his experience here a bit more, what's going on at the TS Alliance with the research business plan, his experience working with docs, researchers, parents over the years, his recent visit to Toronto for business & pleasure, expanding national & global outreach and challenges in this area, the Facebook discussion group and how that's changed over the years, his 4 (yes I said 4) mini-pinchers, his love of music and work as a musician and much more! Take it away Jaye :)

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Jaye Isham, VP of Communication Strategy @ TS Alliance, and beloved TSC community member shares from the annals of his lived experience in Part 1 of this 2 part episode you don't want to miss. In his words, "While I want to give your listeners a little insight into what I do, it's more important for them to realize so much hope is truly on the horizon." We cover Jaye's experience of the changing landscape of social media over the years. In a nutshell, Jaye is responsible "for the outward look, the brands, how we communicate, how we present information, in all kinds of formats". We turn back the clock as I ask Jaye to outline his early career. He graduated w/a degree in communications & a minor in marketing from Texas State University and got a job with a large healthcare system in TX. right out of college. From there he worked for the MS Society in Houston. After relocating to the DC area, he decided to try his hand in an ad agency working on healthcare accounts. After realizing the for-profit ad agency setting was not for him, he responded to a printed help wanted ad in a local paper to work at the TS Alliance to which he responded and the rest is history. His first big project at the Alliance was to work on the website which has been carefully and painstakingly developed over the years into the excellent web platform chock full of resources, it is today. We discuss the many other projects, that he's implemented, facilitated, how the online communities have changed and shifted over the years, handling feedback and criticism from constituents, and continually remaining open to input from all sectors the diverse TSC community. What started as a job for Jaye, soon became more of a calling. His love & devotion to all impacted by a TSC diagnosis is a constant and the impact he's had on our growing and global community is profound. Jaye is also a talented musician and has provided TSC Talks with some unique intro & outro guitar music titled; "Rio Rancho Riffing". We will make the full mp3 sample available for download on our website https://tsctalks.com .

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In this episode, I tried something different! I used pieces of pertinent audio from 6 past guests, some has been released in previous episodes and some content is from the cutting room floor. I kick it off with gratitude and HUGE thanks to the TSC Community, and the Power of TSC Moms that so inspired this podcast. We are bringing to light our variable issues & challenges managing manifestations of TSC, IDD & Autism. It is almost always complicated, lonely and can be overwhelming at times, yet risking vulnerability to share from our daily lives, has played a role in affecting change. Consider the TAND initiative, the FB TAND group, the recent Trauma 101 webinar, TSC Now podcast, and more have come to fruition over the course of the past year. Listen to these women, all mothers, all impacted differently by TSC -with or without IDD & Autism, but yet still much commonality. It's tough, it's ongoing but we can do it. However one is impacted by TSC, IDD and/or Autism, our lived & learned experience is of value and is worth discussing out loud. These audio clips center around parent/caregiver impact, frustrations with social media, loss of community connection, TAND & our own mental health, and misunderstanding and misinterpretation of family, friends & society at large. Dena Hook wraps it up by letting us know what's happening at the TS Alliance in relation to TAND, etc. Guests in order of audio content are as follows; Caroline Clyborne, Rebecca Thereault, Adriana Piltz, Chelsea Holman, Debora Moritz & wrapping it up with Dena Hook.

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Caroline Clyborne, LPC gives us the low down on her upcoming webinar, "Trauma 101-For Parents of Medically Complex Kids" on June 25, 2019. Previously on TSC Talks, Episode 27, Caroline gave us an excellent explanation of the different types of trauma, shock trauma & developmental trauma, and how this is relevant to TSC. In this episode, Caroline gives listeners a review of what trauma is, the various and unpredictable ways we can find ourselves dealing with trauma in TSC, and why it's important for parent/caregivers & anyone dealing with the sort of unrelenting nature of TSC related events to tune in. She gives some D.Y.I coping skills for navigating how to be as self-regulated and resilient as possible regardless of what's going on with one's child medically. Quoting Caroline, "If we are going to talk about self-care and the parent, we're not just talking about going to take a bubble bath. We're talking about how when there is a stressful situation, do parents have the ability in their current situation to manage the distress and then can discharge the anxiety of the situation after the stressful situation has passed?" This is a true learning experience for all of us and after listening, you'll be even more motivated to attend!

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In Part 3 of this three-part series with Dena Hook, VP of Support Services at the TS Alliance, what I want to highlight in this description is our discussion of Tuberous Sclerosis Complex-Associated Neuropsychiatric Disorders (TAND). "TAND describes the interrelated functional and clinical manifestations of brain dysfunction in TSC, including aggressive behaviors, autism spectrum disorder (ASD), intellectual disabilities, psychiatric disorders, neuropsychological deficits, as well as school and occupational difficulties". We discuss the early challenges involved getting doctors to recognize TAND as a manifestation of TSC . For many of us, TAND has been THEE most challenging aspect of TSC care & management with which to contend. Thanks in part to Dena's efforts, we now have a lot of information available to help. The TAND Checklist, which is a helpful screening tool for professionals and "TAND in Education", written by Dena for educators and providing the necessary knowledge & wisdom gleaned from research and her 30 yrs experience working w/school systems. We now have a TAND research project called "The TANDem Project" which will bring together a worldwide team of families affected by TSC, researchers and clinicians to provide scientific evidence for greater TAND intervention and treatment". The impact of Dena Hook's powerful advocacy and fierce devotion on behalf of ALL impacted by a TSC diagnosis is beyond compare and her humble, tireless work has improved the lives of legions of individuals, families who must; wrangle the chaos that TSC care & mgmt can present. The gratitude of the highest order to Dena Hook and her ineffable contribution to improving the lives of those living with and lessening the impact of this complicated and often devastating medical disorder. (Uplifting Funk Pop Instrumental by taiiga | https://soundcloud.com/paavoilves
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