Jill Woodworth

Shelly Meitzler is an amazing, inspiring individual who's life took a challenging turn when she received a diagnosis of TSC in her oldest daughter in August 2001. Starting out in the ER with her seizing baby, Shelly and her husband had to weather the false accusations of shaken baby syndrome by hospital staff before receiving an official diagnosis. From here, she mentions that life as she knew it, was forever changed. Again in 2014, she received another TSC diagnosis in her young son. We discuss the intricate challenges of having 2 individuals affected by TSC, and the varying impact due to the increase in understanding, better treatments, and knowledge in the space of time between diagnosis of her oldest daughter and younger son. She also has another daughter who is not affected by TSC. Shelly shares her unfiltered experience dealing with the intensity of managing the needs of her children & juggling a career, and how this impacted her mental health. She took a leap of faith, leave her former career so

"Be the change you want to see in this world" is one of Mike's favorite quotes and his lived experience clearly exemplifies this intention. In this episode, Mike starts off by advising listeners, "Please people, please tell your doctor because there are drug interactions when you're using CBD" and is one of the major takeaways from this episode. In order to educate physicians treating us or our loved ones, it's exceedingly important to form a partnership, be clear about your use of CBD and Cannabinoid medicine, ask the physician to list it in your medical records with any other medications you may be taking and share the positive impact CBD and Cannabinoid medicine has had for you or loved ones. He emphasizes positive experiences with doctors, “I've had so many things happen when it comes to doctors and I've had good experiences. It's important to talk about that. I've met with doctors, that wanted to fully integrate all cannabis into medicine including a neurologist, here locally, who is now interested in do

Mike Robinson, Cannabis Activist, Founder of Global Cannabinoid Research Center, Severe Epilepsy & Cancer Survivor and fascinating human being has much to share. From his bio on https://mikesmedicines.com; "Mike is a multiple Cancer survivor that’s used cannabis oils and CBD extensively as well for severe epilepsy, chronic Lyme Disease, PTSD, and in pain management. Over the last 6 years Mike has shared his journey and analytics on cannabinoid medicine research globally while assisting patients and helping to teach clinicians globally. Mike is the former Director of Consumer Affairs and Communications at The American Academy of Cannabinoid Medicine. His post-grad education, however is not in cannabis or cannabinoid medicine, rather it’s focus was on International Relations and Diplomacy. He has an extensive background includes being an effective leader of a large Cannabis compassion program providing to the disadvantaged that treated countless medicinal cannabis consumers with various alternative protocol

In this episode, precipitated by a Facebook post which caught the attention of many, titled, "When Law Enforcement Meets Autism", Ricardo A. Gomez shared the events occurring in relation to his son Ryan, a young adult with autism, who was with a direct support worker at a local park recently. Said event escalated into PC245, assault with a deadly weapon. Ricardo starts off giving some background on becoming a Law Enforcement Officer in California as well some history of his son Ryan, who received a diagnosis of Autism at age 3. From here, he narrates the events that occurred on August 16 when his son was at a local park with a job coach a 911 came in as a level one PC245, assault with a deadly weapon. Based on the call and the information provided by dispatch, the deputies believed they were going to encounter a mentally unstable adult attacking a family with rocks due to a misunderstanding of Ryan's behavior. Ricardo calmly outlines the timeline from the perspective of a parent receiving a call from his w

In Part 2 with Alexis Minnaar, we go into further detail on the realities of growing up with TSC. She shares more about relationships, mentioning the fact that she has TSC with potential partners, and how this news was received. Meeting her husband, dealing with people's questions related to facial manifestations over the years, how others react when she shares information on having TSC, and how important finding common ground has been with other individuals and/or families dealing with epilepsy and/or TSC. We discuss her attendance at "TSC Indaba" in November 2018, an informal TSC gathering of families and individuals who live with Tuberous Sclerosis Complex coordinated in part by Professor Petrus de Vries, the TAND expert from South Africa and how powerful it is to connect with others in her country dealing with similar issues. Alexis shares her vision for a comprehensive program for those living with epilepsy and TSC , the need to reach young people, teenagers and offer support, validation and hope. She

In Part 1 of this two-part episode, Alexis Minnaar, an English and Geography teacher from South Africa, and young adult living with Tuberous Sclerosis Complex shares the process of coming to terms with having TSC and learning how to manage the condition herself. When she left home and entered college, living away from home for the first time and studying and working, she describes feeling overwhelmed with this realization "like I got hit with a ton of bricks". Her system for tracking manageable variables in several different journals is really interesting and a positive outcome of struggling hard to accept the monumental challenges TSC case management can present. At a time when most young adults are exploring the freedoms of independence, Alexis had to learn to completely avoid caffeine closely monitor her diet, minimize any alcohol consumption, avoid overexertion during exercise and pay attention to her stress levels. Starting off in a Montessori school, she learned to read and write and from quite an ear

Chief Joseph Snyder & Officer Phillip Kraus of the New Paltz, NY Police Department discuss their background and experiences with community members that sparked the idea behind their new "Occupant with Autism" sticker. This sticker is a combination of police support & Autism Awareness and can be placed on a car or near the door of a home as a heads up for police that an individual within may be functioning differently. We also discuss feedback they've received thus far on this sticker within their community, both positive and negative, & potentially expanding outreach to other police departments. Officer Kraus also discusses his involvement in regional and departmental training on mental health issues, de-escalation & evaluation; providing access to resources instead of arresting and how this program could be expanded to include more autism awareness training. Both officers are open to feedback from their local community on the role of law enforcement when encountering those on the autism spe

Mark Martin is an Adult & Parent living with TSC. He also is the Adult Regional Coordinator of 6 States for the TS Alliance, & was a past Volunteer of the Year. He started a Facebook group for TSC Dads, has worked as an ER Tech, and is an accomplished musician. There is never a dull moment for Mark! He's a true influencer across the community as his perspective as Adult with TSC AND having a son w/TSC gives him a broad perspective and further fires his passion for connecting as many people as possible with resources, information & friendship in the TSC grassroots community. In this episode, Mark shares his lived experience with TSC from the early days when he did not have a diagnosis, and family members thought he was "making seizures up for attention". His overwhelming desperation led him to attempt to take his own life. Mark's resilience is incredible and despite many challenges to his mental and physical health over the years, he remains steadfastly committed to the TSC community, his family,

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 & h

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.

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

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

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

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

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

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 experi

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 situat

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 resea

In Part 2, Dena discusses crossing paths with Kari Rosbeck (TS Alliance President) and how she got her first position with the TS Alliance, moved to DC and never looked back. She outlines the development of the volunteer programs she initiated, and established, her process in recruiting and retaining a large volunteer network and the importance throughout of building relationships. Dena is and has been a lifeline for so many in the TSC community and her ability to continue to recruit high caliber individuals at the volunteer level is remarkable and should serve as an example for any other non profit looking for a compassionate, sustainable model for recruiting, building, training and mobilizing an exceptional volunteer team consistently, year after year. Her work doing so as VP of Support Services has supported the many progressive efforts of this award-winning nonprofit charity to meet and exceed the needs of its varied & complex constituent populations and has had a profound impact on the quality of li

The TSC world famous & beloved Dena Hook, Vice President of Support Services at the TS Alliance comes on the podcast to discuss, well, a lot. This is Part 1 of our conversation and Dena walks us through her history right up until she started working at the TS Alliance in 2007. Dena shares her experience advocating for her son with severe dyslexia in the early years of special needs legislation and how that inspired & launched her career in advocacy. She describes that it was a time when being "in the building" for a kid with special needs, was about as much support as was given. Dena was Technical Assistant Coordinator for the National Parent Training and Information Center (PACER) for over 6 years training educational advocates throughout the country. She worked with the Office of Special Education Programs (OSEP) during the reauthorization of the Individuals with Disabilities Education Act in 1997. A published author through Incentive Publication, she wrote: “Success with IEPs” and “An IEP Writ