87 episodes

A podcast where we talk about Tuberous Sclerosis Complex and other related issues. TSC is a disorder as common as ALS that causes benign tumors to grow in different organs of the body. Tune in to hear parents/caregivers and professionals alike, discuss special needs issues related to TSC which are relevant to all affected by special needs. The nature of TSC and special needs management requires one to become an explorer of uncharted territory; to wrangle care from many facets of the healthcare, educational and social services system for which no long term solutions have been clearly documented. Talking about what we've found on our explorations, what's worked and not worked will contribute to improved quality of life for all those affected & provide an audio record for future generations to come. Spreading hope and the knowledge that we are not alone in our challenges and our lived experience matters.

TSC Talks! Jill Woodworth

    • Health & Fitness

A podcast where we talk about Tuberous Sclerosis Complex and other related issues. TSC is a disorder as common as ALS that causes benign tumors to grow in different organs of the body. Tune in to hear parents/caregivers and professionals alike, discuss special needs issues related to TSC which are relevant to all affected by special needs. The nature of TSC and special needs management requires one to become an explorer of uncharted territory; to wrangle care from many facets of the healthcare, educational and social services system for which no long term solutions have been clearly documented. Talking about what we've found on our explorations, what's worked and not worked will contribute to improved quality of life for all those affected & provide an audio record for future generations to come. Spreading hope and the knowledge that we are not alone in our challenges and our lived experience matters.

    TSC Talks! Michael Pedersen, Cannabis in Canada, Cannabis Update Podcast & More

    TSC Talks! Michael Pedersen, Cannabis in Canada, Cannabis Update Podcast & More

    It was my pleasure to have Michael Pedersen is Host/Producer of Cannabis Update Podcast, Founder of Distinct Media as well as Station Manager of Multicultural Broadcasting Corporation, Inc. in Calgary Alberta. “Michael has worked in broadcasting and managed radio stations since 2005. Before radio, he worked in the Vancouver film industry as a post-production editor and location sound recordist. He has produced an estimated 7000 audio commercials for radio along with countless jingles, stingers, sonic brands and more. Distinct Media now produces radio commercials & audio for video for small to medium-sized businesses looking to get a "distinct" form of brand awareness in multiple markets across Canada & beyond.” He also is a husband and father of two young boys.

    I appreciated Michael’s willingness to come on the podcast and share some pro-tips related to podcasting and marketing that have already proved helpful. He infuses his work with loads of enthusiasm, wit and genuine interest in all subject matter. It was a lot of fun to chat about common challenges in podcasting, experiences interviewing in the cannabis space as well as hear his thoughts on the state of the cannabis industry in Canada vs the US, and more.

    The Cannabis Update Podcast is a podcast that gives leaders & organizations an opportunity to tell their stories and share information. Based on a long-form interview format, the podcast has featured countless industry leaders, giving them an opportunity to communicate their message in a timely and professional manner. This podcast falls under the umbrella of Distinct Media, which he also founded & currently directs.

    Here's a quote from Michael discussing the podcast, “My day job is a general manager at a radio station in Calgary, Alberta, Canada. So, my background is in production. So naturally, podcasting is something that I liked originally like, I like listening to them. And when the cannabis whole, the whole business of cannabis in Canada started to evolve and grow, I saw a need for a podcast that sort of interviewed industry players. So with my production background, and with my interest in the cannabis space, I thought, well, this is perfect, why don't I just jump in and start so that's really why I started and I had friends who were investing in Cannabis Stocks in Canada. And when I looked into it, I thought, well, there's got to be a podcast out there, I can listen to where I can learn about the companies. And there wasn't, I thought, Oh, geez, I got it. I better do something here. So that's kind of like how I started, and the podcast has evolved over time. Now it's a little bit more culture and not always business. You know, some science I try really get into the individual, the personalities of the people in the space, so people get to know who's kind of steering the ship in these companies, you know, a little bit more than simply numbers and figures”
    He talks about podcasting challenges and how he created Cannabis Media Collective to bring several podcasts together, “Why not create a place where all of us can produce and publish together so that if you subscribe to one thing, the cannabis media collective, every single day, you get a new podcast from a new producer? And you don't have to go around and have 50 subscriptions and try to read through them and all that. The only thing about it though, is it's a lot of work. And it's hard to monetize it, like anything. And yeah, it's hard to make money off it. So, you have to really like it has to be in your heart. You have to want to do this. And you have to write to make it work in your schedule. I have two little boys. So, I'm up at 5 am most days producing and editing and sending emails and all that because that's my time. I can't do it at your school time.”

    He mentions challenges getting paid for his work and how he addresses th

    • 39 min
    TSC Talks! Trailblazers! Nadia Bodkin, CEO & Vincent Crowley, SVP of Blaze Therapeutics, LLC

    TSC Talks! Trailblazers! Nadia Bodkin, CEO & Vincent Crowley, SVP of Blaze Therapeutics, LLC

    Nadia Bodkin, CEO and Vincent Crowley, SVP of Blaze Therapeutics, LLC are an incredible team bringing a rich and relevant background of lived and learned experience across multiple special interest groups, including the rare disease community, military & veteran community, as well as health care community and more.

    "Blaze Therapeutics exists to offer plant-based solutions to the rare disease, the US Veteran, and professional medical communities that target the improvement of overall health, wellness, and quality of life. We believe in amplifying the beauty of life through the pursuit of wellness. Blaze Therapeutics is comprised of a team of experts concentrated from the healthcare, patient advocacy, nutraceutical and cannabis industries. Blaze Therapeutics is engaged in supporting the open market through Responsible Distribution of plant-based dietary supplements and the Rx market through the pursuit of FDA approved cannabis-based nutraceuticals."

    Nadia is also President at EDSers United for Ehlers Danlos Syndrome, but is also a member of the advocacy movement in regards to Blaze. Nadia is a seasoned rare disease patient advocate, born with three main rare conditions herself. Immediately after graduation, Nadia went straight into advocacy through EDSers United, a foundation she founded as a student. Nadia has held leadership positions at several rare disease advocacy focused organizations assisting in everything between nonprofit corporate management to event planning to therapeutic product development. She is also one of the founding members of New Love Ventures LLC and facilitates the coordination of the Rare Advocacy Movement's activities along with fellow colleagues.

    Vincent Crowley, Senior VP, is a medically retired veteran of the United States Army. His past experience in the army was as a dental hygienist. He also studied psychology at the University of Maryland. Vincent is co-founder New Love Ventures, During his years of service, Vincent discovered a heightened awareness for his core values, and beliefs (i.e loyalty, duty, respect, selfless service, honor, integrity, and personal courage). Incorporating these core values into his daily life and his passion to help other service members navigate life post military service and transition back into the civilian sector, spurred an interest to earn a degree in Psychology and Mental Health. As a student of the University of Maryland University College, Vincent makes himself available to veterans seeking guidance through social media platforms and in-person meetings. As the Executive Sales Director at Blaze Therapeutics, Vincent is leading the effort to introduce the military community to Blaze Approved nutraceuticals and therapeutics as alternative options to addressing their health concerns."

    This episode is rich with information. A few pertinent quotes:

    "We both connected over our passion for advocacy work. And his focus has always been on advocating for veterans and helping them transition into civilian life. And after meeting and gaining a better understanding of each other's advocacy work, we learned that both the veteran and rare disease communities are both dealing with very similar socio-economic and healthcare issues."

    Discussing the responsible distribution of CBD:

    "Responsible distribution model is a model designed specifically for the healthcare industry for cautions taken to protect customers' safety and ultimately protect businesses from potential liability issues. And because the cannabis industry is young and vulnerable, unfortunately, most of the products on the market are contaminated with toxins and labeled inaccurately. So products that are responsibly distributed, come with a certificate of analysis that are unbiased third party tests."

    Talking about other products in the holistic industry:

    "The overall holistic products industry includ

    • 1 hr
    TSC Talks! Canna Combo Mini Pod~With Blaze Therapeutics, Michael Pedersen, Tyrone William & Mike Robinson 🎉

    TSC Talks! Canna Combo Mini Pod~With Blaze Therapeutics, Michael Pedersen, Tyrone William & Mike Robinson 🎉

    A mini compilation of a few Canna conversations; Blaze Therapeutics, Michael Pedersen, Tyrone Williams & past guest Mike Robinson.

    1-"Blaze Therapeutics exists to offer plant-based solutions to the rare disease, the US Veteran, and professional medical communities that target the improvement of overall health, wellness, and quality of life. We believe in amplifying the beauty of life through the pursuit of wellness.

    Blaze Therapeutics, Nadia Bodkin-Rare Disease Advocacy Professional, Executive Officer, Philanthropist and Vincent Crowley-Senior Vice President-Blaze is comprised of a team of experts concentrated from the healthcare, patient advocacy, nutraceutical and cannabis industries. Blaze Therapeutics is engaged in supporting the open market through Responsible Distribution of plant-based dietary supplements and the Rx market through the pursuit of FDA approved cannabis-based nutraceuticals."
    Website: http://www.blazetherapeutics.com

    2-Michael Pederson, Host, Producer of Cannabis Update Podcast. "This podcast features stories about the leaders and organizations involved in cannabis legalization in Canada. This is not a "Pro Pot"​ podcast, but a balanced representation of news and information pertaining to legalization"
    Website: https://www.distinctmedia.ca/cannabis-update-podcast

    3- Tyrone Williams-Proud Father👣 Direct From Source Supplier🌿License THC and Hemp Product Acquisition and Quality Control Specialist. I’m a second generation grower with 20 years in indoor hydroponic space design and quality control. Specializing in licensed farm direct THC products of the highest quality. The products personally rigorously tested and vetted from only the best quality. I have designed products that have proven positive results that I will be introducing to the market, if anyone is interested in an investment opportunity.

    https://www.linkedin.com/in/tyrone-william-5b4b45195

    4- Mike Robinson -Cancer Survivor/Cannabis Activist, Founder, Global Cannabinoid Research Ctr., Chief Operating Officer at Nanobles, Inc. "Cannabis is Medicine and it's important it's recognized globally as such by all nations. Setting the pace now to educate those providing healthcare is imperative for both patients and providers. As a cancer survivor with severe epilepsy that quit a 24 yr. pharma opioid addiction with the use of Cannabis oils to overcome, choosing a healthy alternative medicine was the key to my own success - and for many is the key to exit the Pandora's Box of addiction, illness, and so much more."

    https://www.mikesmedicines.com/mikes-other-publications/
    https://www.linkedin.com/in/mike-robinson-~-cannabis-heals-256b3192

    Thanks for tuning in! Stay tuned for Blaze Therapeutics up this week and keep on keepin' on.
    https://tsctalks.com

    • 12 min
    TSC Talks! "10 and Ace Despite It All" On TBI, with Nikki Lawley, Former Pediatric Nurse, TBI survivor, Cannabis Patient

    TSC Talks! "10 and Ace Despite It All" On TBI, with Nikki Lawley, Former Pediatric Nurse, TBI survivor, Cannabis Patient

    Nikki Lawley is a former pediatric nurse, former blackjack dealer and much more, who went from a full active life to chronic daily pain and other debilitating symptoms after suffering a traumatic brain injury on the job in 2016. This is the story of how it happened, what happened and how she's been able to move from existing in survival mode to having a life filled with hope despite ongoing challenges. In her own words; "since my (TBI) injury, one of the things that I've learned more than anything is about living in the moment. my life changed a second and I can't go back and write a new ending, but I sure can start now and I just have really become more human with this injury. "

    Nikki states: "I suffered both a traumatic brain (TBI) and whiplash injury to my neck. Due to this, I have been unable to work as a nurse ever since. My injury also comes with some debilitating symptoms, which include cognitive issues, chronic headaches, and severe neck pain. Cannabis helps alleviate my pain, bringing it from a 7/10 daily pain and down to a more tolerable 2 and 3. Other symptoms of my injury include impacted balance/coordination, visual impairment, and depression/anxiety."

    She details what was an active, chock full life, growing up in Buffalo, NY, relocating to Fort Myers, FLA and then returning to the Buffalo area, having to change careers moving from nursing to HVC sales, working at a local Planned Parenthood and back to nursing, as well as taking on a second job as a blackjack dealer at a local casino. After listening to Nikki talk about how she was able to roll with life's challenges repeatedly and reinvent herself time after time, one can see how life as she knew it coming to a screeching halt after her TBI, was a brutal blow. It was in part, the perseverance and tenacity from years of walking through changes and challenges that gave her the ability to push to find answers and not give up after her injury.

    Regarding the aftermath of the TBI, she states, "And I expected to be out a day, maybe two, definitely not three-plus years. And when I say, I could not cognitively function, I could not stop the head pain. I literally cried for the first year after my injury so often, because I just, I had so many different medications and yeah, so many treatments failed and people were like, "Well, it can't be from the concussion." She goes on to further explain, "So two of my ligaments are completely level three in the front and they really caused a huge amount of issues as far as, I get no cerebral spinal fluid CSF flow to my frontal parts of my brain because of the way the bones are and again, it causes complete compression and occlusion of the CSF flow. The neurosurgeon said, Oh, you don't need surgery will wire back to work and, and I constantly felt like I had to tell people my side of the story like I'm not crazy people, there's something really wrong. It is not normal to never not have a headache. So one of the biggest things that devastated me and probably the most of my cognitive challenges was I can't count anymore. When I worked at the casino, I emptied a deck of cards. So fast in blackjack, and I could count like backward. Just never a challenge. I cannot count higher (now) consistently than five."

    So after years of seeking treatments, paying out of her own pocket repeatedly, traveling around the country and doing everything and anything she could to lessen the daily nightmare she was living in, on a trip to Vegas, she saw a "sign from God" in the form of a billboard advertising,

    “So I'm standing outside looking and it's hot, and it's like, the sun's on my face. So, I should be feeling happy because I came out of Buffalo in January. I wonder though. They have these driving billboards on the Vegas Strip, and I see this “get your medical cannabis card today. ..call one 800 get your weed card” and I’m like, I doubt t

    • 58 min
    TSC Talks! No Holds Barred~Advocate Extraordinaire! Daniel Price~TSC, Rare Disease, Adoption & LGBTQ Advocate

    TSC Talks! No Holds Barred~Advocate Extraordinaire! Daniel Price~TSC, Rare Disease, Adoption & LGBTQ Advocate

    “You are here for a purpose. There is not a duplicate of you in the whole wide world; there never has been, there never will be. You were brought here now to fill a certain need. Take time to consider what it might be.” Lou Austin.

    This happens to be one of Daniel Price’s favorite quotes and as you will see and hear, has truly framed the way Daniel lives his life. Daniel Price, a rare disease and adoption advocate, and young adult from the Seattle Washington area who is living with TSC. He’s Auxiliary Adult Regional Coordinator West and has been an active volunteer for the last 3+ years. Working in the airline/travel industry part-time, has given Daniel the opportunity and scheduling flexibility to travel the country and to parts of the globe to participate in TSC conferences and other events such as; Step Forward to Cure TSC walks in Seattle as well as Northern and Southern California; Sound Bites in Minnesota; Regional Conferences in Houston, San Diego, Saint Louis and Los Angeles; and the 2018 TSC World Conference in Dallas. Recently he attended the TS Alliance Board Meeting in Chicago and the 2019 March on Capitol Hill in Washington, DC. He’s flown to Melbourne, Australia to help them with their first Comedy for a Cure.

    Daniel was adopted from mainland China at the age of 3 and diagnosed with TSC at the age of 6 when visiting a dermatologist to examine the red bumps on his face. He is the only family member with a rare genetic disease and states, “I've had seizures as a younger child. Development delay issues in K through 12 education and had a special education program. I've gone through a speech and language program, was kicked out and then put back in later in my K to 12 programs and have had many other challenges through trying to maintain in work, living and other daily challenges as well facing life “

    Daniel’s mother sought the best treatments for Daniel as she could at the time but the TS Alliance was just being formed and there was not as much information available about TSC as there is currently. Eventually, Daniel found the TS Alliance, stating, “I reached out to- I think the headquarters in DC and they mailed me out to a couple of people in the Washington area. And they email-connected me to someone named Gloria, and I was like, Oh, okay. And then she's said that we're going to have a picnic coming up in Seattle. So, then I go to this picnic and meet other people (with TSC & families), and it changed my life. It changed the way I saw it. So yeah. I've learned a lot from Gloria and the other people that within the TSC community within the Pacific Northwest”

    Seeking better medical care, Daniel traveled to the TS Clinic in Cincinnati and was excited to be able to visit all TSC related specialists in one location and talk to medical professionals with specific expertise in treating TSC. He carries a book on TSC with him to every appointment and hospital visit to share with any and all of the treating team to not only make sure they have a quick reference guide on TSC at their fingertips but also raise awareness of the condition and educate as many people as possible.

    Outlining ongoing challenges Daniel states, “I mainly struggle with TAND, (stands for) tuberous sclerosis complex neuropsychological disorder. I struggle a lot with depression, anxiety, mood swings, socializing with other people. And many people just don’t see it They see a regular person going to work, paying their bills, driving, going to school, but they don't see the outcome of what TAND or TSC. They don't see the real picture. They don't see the big picture of what TAND can do. I do get mood swings. There are times where I just want to like shut people off and shut off from the world when it's just too much sometimes”

    We discuss his return to China, with his entire family, and was able to meet caregivers and oth

    • 36 min
    TSC Talks! Tiffani Goff Unplugged. Author of Loving Tiara: Memoir~"Mom, Wife, Interior Decorator, Chronic Volunteer"

    TSC Talks! Tiffani Goff Unplugged. Author of Loving Tiara: Memoir~"Mom, Wife, Interior Decorator, Chronic Volunteer"

    I was honored to interview Tiffani Goff, mother, blogger, author of Loving Tiara: A Memoir on the podcast. I followed Tiffani’s journey with her daughter Tiara who had TSC for several years on Facebook as she shared glimpses from her day to day life with an incredibly challenging presentation of TSC, one that would ultimately claim Tiara’s life. I observed her posts in the days leading up to her passing and waited and watched for her to reappear on the other side of this loss. So many of we parents of loved ones affected by chronic life-threatening conditions live with the reality that we may lose our children at some point in our lifetimes and while this is not often the case, it happens regularly.

    What Tiffani details is often heart-rending and painful, Treatment after medication after surgery after procedure. In Tiffani’s own words; “So whenever normally work, didn't work for her. So it was a lot of trial and error. And I think for even families who have a child not as affected (by TSC) as Tiara, that's the most important piece as a parent and/or caretaker is being able to identify; Is this a behavior from medication? What're the side effects? What is the actual condition? How is my child feeling when they can't communicate? That's the hardest part and guessing and guessing. Am I doing this right? Am I doing this wrong?... but I kind of feel like the best advice, if I'm giving advice was kind of just gotta go with your gut. And you just have to really pay attention.”

    Managing a condition such as TSC requires a parent or caregiver become incredibly knowledgeable about various aspects of medicine, A TSC case manager is a person that has learned to traverse multiple systems of care at the same time and bridge the communication gaps between these systems of care in order to make sure nothing slips through the cracks, amassing legions of knowledge about pharmaceuticals, insurance companies, social services, the mental health and behavioral health industry, dentistry, and more in order to insure that all treating are as close to on the same page as possible.

    “And when I was dealing with Tiara after the first couple meds didn't work, and I knew they weren't working and I realized that some of the doctors, like when a doctor, in the beginning, who's our first doctor, just picked up and left. I was like, Oh, my, I realized I'm responsible for her. So a doctor can just leave us and he was like our lifeline. And so that first made me realize I have to be in charge here. I can't just depend, (on anyone) and then when you can't get visits, so I just put aside my fear. I think that is one of the biggest things for anyone, whether not getting a new job or being afraid to speak up, is fear. And I just was …I am not going to. I was scared, but I was like, forget it. I'm not being scared.”

    Tiffani continues throughout the episode to walk us through the timeline of her life managing Tiara’s TSC diagnosis, which got more involved, complicated and convoluted with each passing day but also impinged greatly on the lives of her family, She discusses these challenges as well. Challenges to find balance in the midst of chaos, challenges to stay connected to all of our family members and fulfill our “societal obligations” when our hearts are breaking in pieces daily.

    “So I think I just knew Tiara was not going to live forever. So it was kind of like, I know she's taking up so much time but these kids are here for a reason. I've got two other kids and I can't drop the ball and I knew wasn't going to be forever. You know, so it was kind of like God was keeping me going because they were going to be here. I knew they were going to be here a lot longer, and I just couldn't abandon them. And my husband is the sweetest guy in the whole world. But he's never filled out a piece of paperwork for school. He doesn't know.

    • 1 hr 3 min

Customer Reviews

charlie739574 ,

Great host

The host of this podcast makes difficult subjects easy to understand. Such a range of topics! The mental health aspect, seizures, autism it’s all here.

Luckyl7 ,

So much information!

This is an amazing podcast! So much information that is applicable across a wide spectrum. Information on TSC, autism, seizures, special education, therapies just so much information. The podcasts are well done and Jill is a great interviewer. Highly recommend!

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