TSC Talks!

Jessie Gill, AKA "Marijuana Mommy" is a Mom, Cannabis Advocate and R.N with a background in holistic health and hospice. She shares the story of her path leading to cannabis advocacy after a spinal injury left her at a personal rock bottom. Jessie loved her career as a hospice nurse, inspired been inspired to enter the field of nursing by her mother, also a nurse. After having unsuccessful spinal fusion surgery, taking multiple heavy-duty pharmaceuticals, she reluctantly became a medical marijuana patient.

To her surprise, cannabinoid medicine provided great relief and further motivated her to combine her education and experience as a nurse with cannabis advocacy and launch Marijuana Mommy. Her site, www.marijuanamommy.com teaches new patients how and why to use cannabis, while challenging the stigma against marijuana use. She's had great success and is an established expert in the cannabis industry. Due to a high volume of requests for one on one support, she's rolling out a new course in a few weeks designed to walk individuals through all the details they need to know to get started safely using medical marijuana.

We discuss her process of working with clients, her writing and web platform, her thoughts on the CBD market and she makes several recommendations on brands and safety-related to CBD. Overcoming the fear and stigma surrounding mmj use is decreasing and collaborating with medical professionals who are knowledgeable about cannabinoid medicine and willing to work with their patients can often be a challenge. Her process is to review all the medications that the patients are on, talk about potential interactions and things to watch for, and we have to work with physicians to manage medication adjustments. "That's a big piece of what I'm pushing is to get people to be aware of that and and not let that stop them"

Cannabinoid medicine is a viable option for many and there are ways to do it. Jessie encourages people to keep asking questions and push past your fears and doubts. She sees Cannabinoid medicine offering a far more individualized treatment which can be adjusted incrementally based on each person's unique presentation and provide. "I think the whole pharmaceutical industry is focused on having a pill that is mass-produced and everyone is different." We wrap our discussion with her sharing some insight on CBD. "You know, CBD is so important. The majority of my patients take more CBD than THC. I take a lot of CBD. But again, it's individualized, just like THC. Just like all of the cannabinoids are, you know, some people respond better to one thing than other things and it's a matter of trial and error. But I think the really the most important part is to get high-quality products and not get junk."

Thanks Jessie for sharing your insight and wisdom gleaned much lived and learned experience with TSC Talks!

Jessie's expertise has been been featured and cited in a variety of publications like Forbes, High Times, and Centennial Press. My work has also appeared in a variety of publications like Good Housekeeping and VICE. I’ve also been highlighted on Viceland and in a variety of news features and documentaries.

Jessie's links:
www.marijuanamommy.com
PrettyPipeShop.com
Cannabisforchange.org
Facebook: https://www.facebook.com/jessie.gill1
Instagram: https://www.instagram.com/jessiegill.marijuanamommy/
Twitter: @Marijuana_Mommy
LinkedIn: https://www.linkedin.com/in/jessie-gill/
YouTube: www.youtube.com/c/MarijuanaMommy

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Daniella Benea, Pharm.D., licensed pharmacist working in the medical marijuana industry in CT & MA comes on to discuss her experience thus far working in the growing cannabis industry. A graduate of UConn School of Pharmacy, Daniella started out working as a Stop & Shop store pharmacist but took advantage of an opportunity to work at a CT dispensary, hoping for more hands-on patient engagement. She discusses the medical marijuana industry in both CT & MA and gives her thoughts on the future of cannabinoid medicine, including the impact of the current MA vaping ban.

The bulk of our discussion centers on her patient interactions, the sorts of concerns she addresses and her process for analyzing a patient's medications and making recommendations related to the vast array of choices available. We talk about the most common patient medications and diagnoses, and she gives some examples of how these considerations influence her recommendations.

There is much opportunity for one on one interaction, as she had hoped and she loves the positive atmosphere and the joy of seeing improvements over time in many of the individuals with whom she's worked. She emphasizes the importance of forthright communication with a medical doctor and how this will further solidify the validity of cannabis as medicine. Finally, we discuss the CBD craze and she advises caution when choosing a brand and dosage as well as mentioning that it is not a miracle cure-all and safety needs to be a top priority when choosing to use not only CBD but all Cannabinoid medicine.

In conclusion, I'm sharing a apropos quote from Daniella on the podcast regarding use of CBD; "There's a lot of CBD out there. It's almost like the newest fad. people making CBD oil, selling them all kinds of places. I just like to give a caution. A lot of people will like to try it before they become a patient to see what is the thing that is helpful for me to know where the product is made. Do the research? Is it tested? Where is it being grown? It's been grown responsibly. chemicals in it? What's the dosing? A lot of those products don't have dosing, they just have a general...Oh, "there are 1000 milligrams in a bottle" Okay, well, what's the measuring tool?"

She encourages all listeners to call The Botanist or Prime Wellness with questions
(if local to CT or MA) if you're interested in learning more or booking an appointment.

Links are as follows:
LinkedIn: https://www.linkedin.com/in/daniella-benea-pharmd-54a38418b/
Facebook: https://www.facebook.com/daniella.benea
Prime Wellness: https://www.facebook.com/PrimeWellnessCT/
https://www.primewellnessofct.com/
The Botanist: https://www.facebook.com/TheBotanist.MA/
https://www.shopbotanist.com/locations/worcester/
Check out our newly launched Indiegogo Crowdfunder, raising funds to test, and compile a Family Cannabis Guidebook with supporting podcasts: https://igg.me/at/TSCTalksCBDCannaTestGuidebook/x#/

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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 she'd be able to devote more time to her family and TSC case management.

"In January 2017, Shelly joined the team on as National Walks Coordinator; in September 2017, she joined the staff full time. Shelly has been involved with the TS Alliance for the past decade, including serving as both Community Alliance Chair and Step Forward to Cure TSC Chair in Delaware/Lehigh Valley. Last year, she delivered an inspirational speech at the TS Alliance Congressional Briefing on Capitol Hill chronicling her journey as a TSC mom to Ashlin and Mason. She is grateful to have an extended, supportive family that has helped navigate the journey of TSC and allowed her to be involved on various levels in the community. Shelly’s story has provided hope as ongoing TSC research has offered new insight over the last decade and solidified her determination to continue to advocate, educate, and raise vital research dollars for all those impacted by TSC. In her free time, she enjoys spending time with family and friends, laughing, enjoying life, and the occasional hockey game with her husband, Matt." (tsalliance.org)

There is not much that rattles this powerful advocate who above all else is devoted to her family, friends and work at the TS Alliance, improving the quality of life of those affected and working to discover a cure. In her own words; "I'm spontaneous, fun, love to be around people, love to make me people laugh. Nothing compares to being a MOM....love my kids more than anything. And will give everything but UP, to find a cure for Tuberous Sclerosis for Ashlin, Mason, and all those affected with TS!" Keep on keeping on Shelly! And thanks for the inspiration.

Shelly's links:
https://www.tsalliance.org/about-us/our-team/
https://www.facebook.com/shelly.richards.313
https://cdmrp.army.mil/cwg/stories/2017/shelly_meitzler_profile
https://www.linkedin.com › shelly-meitzler-054877160
https://twitter.com/momof2withtsc
https://www.readingeagle.com/life/article/wyomissing-mom-a-tireless-advocate-for-her-children
https://www.youtube.com/watch?v=V9IvFxonu6M

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"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 doing an extended EEG on me in the hospital, allowing the oil in the hospital while he does it. He wants to take away what little medication I'm using right now, while I'm on oil to possibly see if I can escape all pharmaceuticals.

Additionally, Mike shares his knowledge and concerns on the state of CBD drug development in the US and the focus on developing pharmaceuticals from CBD isolates with additives that are unnecessary and can be harmful. “We need more clinical trials and research on human beings, and a more individualized approach to medicine overall, but particularly when it comes to cannabinoid medicine”. He admonishes: “It's time for America to step up to the plate. We don't need legalization. We don't need government control just end prohibition. End prohibition and allow the research”

The information and discussion in this episode is involved and extensive. I want to add that we are not doctors and are putting this information out there in audio format to broaden the scope of our understanding and include resources and the voices of those with lived experience. I’m including some links to more of Mike’s online resources and work and will look forward to future panel episodes and further discussion on the topic of Cannabinoid medicine and will be recruiting medical professionals, nurses and more to further this important discussion.

Check out this new nonprofit Mike started with his partner Anne Mari based on their experience with Genevieve and desire to create a wave of love and fun for disabled kids; "Bring Back Santa Barbara's Carousel! Our first mission: By participating in Genevieve's Carousel Challenge, which started on her 16th Birthday 8/6/2019, and getting others to do so you'll create a wave of love and fun as well as create more carousels for disabled kids to enjoy. You can give simply by sharing this website and/or challenging those you know to post their favorite carousel moments with the #CarouselChallenge hashtag - follow on Instagram @carouselchallenge - and share your photos with us so we can share with the world too!. Let's create something big that will benefit kids that don't ask for much and give us plenty of joy while at the same time making rides available for more people every day!" https://carouselchallenge.com/

More links:
https://www.facebook.com/MikesEpilepsy
www.mikesmedicines.com
https://globalcannabinoidrc.com
http://www.cannabisindustryinstitute.com/cannabis_speaker/mike-robinson/
https://hightimes.com/health/mental-health-cannabis-anxiety-depression/
https://www.civilized.life/articles/how-these-patients-used-cannabis-to-replace-opioids/
MikeRob47354384
https://hightimes.com/culture/genevieves-journey-how-cannabis-helped-save-life-create-family/
https://www.askmen.com/fitness/health/why-you-may-want-to-consider-using-cbd-after-a-workout.html

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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 treatments, published journalist and international cannabinoid research specialist, former Registered Ca. State Lobbyist 1997, Pro bono non-attorney representative for children with disabilities nationwide for over 2 decades, a member of the Board of Directors for Big Brothers and Sisters, the founder of multiple nonprofits that advocate/advocated for the rights of disabled children. Most important Mike is well known for taking on one of his compassion patients, a child with severe autism and epilepsy that received precious oils from his program, is now his own daughter."

Mike starts off talking about the first time he used CBD unknowingly to treat his severe, refractory epilepsy with status events caused by a high-speed auto racing wreck. He had right side paralysis, was in a wheelchair, intubated and put into ICU in a coma 39 times, has had over 200 hospitalizations after being brought to ER in status over an 18-year period. It all came to an end on September 8, 2013 with the introduction of “can't eat it all” Korean Ruby, given to him by a roommate which was edible balls of CBD. He gained the understanding that cannabis is awesome medicine if you know how to use it correctly. Mike is also a special needs attorney & advocate who has worked extensively across the US, pro bono, representing families in special needs litigation. After going public about his treatment with CBD and Cannabinoid medicine he was unable to litigate due to his use of a schedule 1 substance so turned his focus to working in the compassion program. The compassion program was started under Prop. 215 in CA. It was the dream of Dennis Peron to provide treatment for those people with severe conditions that can't afford the oils, don't know what to get, then bringing them what they need, showing them how to use it, researching the actual product, the actual Cannabinoids being used and show family members, “Hey, this is why we're using this application”. It could be oils that are ingested it could be suppositories, etc.

Mike continues the narrative, sharing how he was on his way to check in with an individual who then was then 1-year seizure-free, now 4 years seizure-free when he got a call from a frantic mom concerned about her daughter with autism and severe epilepsy. He remembers being profoundly concerned when this mother gave him the list of multiple medications, she was taking that didn’t jive with each other and went to meet with this parent. He showed up at the house and the daughter was having a grand mal status seizure. Mike was able to help this family treat the daughter’s epilepsy with CBD oils and whole plant medicine, “I’m a firm believer in using the whole plant when it comes to severe autism. I believe that using THC, it's degraded cousin CBD, I'm sorry. CBN. CBN is a cannabinoid that really mellows out any behavior, including my own, it promotes sleep, rest. And makes the mind rest. So it really calms down children with autism. Yes, CBN. So anyway, I mean, she responded so well. It was just beyond incredible. The day after she started her mom took her to the doctor and the doctor was like, What did you do what happened?”

There is so much more discussed in this episode regarding Mike’s phenomenal advocacy and perseverance in the face of incredible barriers and resistance from within and without the healthcare and medical communities. Stay tuned for more from Mike in Part 2 of this informative and moving podcast episode! You can read more about Mike’s work at:
https://globalcannabinoidrc.com/
https://www.mikesmedicines.com/
https://nanobles.com/
https://www.linkedin.com/in/mike-robinson-~-cannabis-heals-256b3192/

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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 wife at work that his son was in the middle of a critical incident as well as from the perspective of a trained Law Enforcement Officer. His narrative of his inner experience of these events and the many questions raised in his mind from both perspectives gives the listener a chance to hear his process of maintaining outer calm while continuing to note concerns along the way without letting unknowns and fear cloud his ability to remain present and do what was needed to help his son and family recover and stabilize from this traumatic incident.
Despite moments of sheer terror as he imagined Ryan's inner experience and the many unknowns with which he was faced over the course of the day, he was able to remain calm. Following the day's events, Ricardo chose a proactive approach in attempting to piece together how an innocent situation evolved and escalated. He met with the branch of law enforcement involved in securing and transporting Ryan to a local facility for evaluation, reviewed the body cam footage from the police officer involved in the event, spoke with his son's direct support professional and was able to gain understanding and insight which he chose to integrate into a learning experience. Ricardo composed a few facebook blog posts which can be read on his Facebook page and which has been posted as a guest blog post with his permission at https://nickysgardensofhope.com. He offers his interpretation of the situation as well as how he is using this event in which things could have ended in far more tragic ways to communicate the need for better training for families of special needs individuals in terms of how to act around police. In his words, " This whole experience taught me that just as law enforcement receives tactical communication training, the autism community also needs training on how to communicate and react to law enforcement. We ended the meeting talking about putting a training together at our local church for parents of special needs and case workers on how to properly communicate/interact with law enforcement. This can help avoid unnecessary use of force situations." Stay tuned for more information on how Ricardo's valiant efforts to take the higher ground evolves into initiatives and opportunity to bridge gaps of communication and reduce fear surrounding interactions with police officers within the autism and special needs communities and give Law Enforcement an understanding and opportunity to better understand the challenges of a wide range of community members as they work to perform their jobs keeping all members of their community safe and secure.

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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 emphasizes throughout, that while it's incredibly difficult to come to terms with acceptance of having a condition such as TSC that impacts every area of her life, it is possible to manage and have a good quality of life.
Despite some teenage rebellion which she outlines, she has fully come around to acceptance;"What got through to me, I think was the idea that you can have fun, but in moderation". Alexis wants all to know that despite the often grim information given to families upon receiving a diagnosis, not to let any of this information be the final word. "I think we need to try and come together and put up a system that educates teenagers, in particular, on their condition as well as parents....where you say, your child is not in primary school anymore- they are trying to find their own identity. Yes, how you can help them, give them these alternative safe options, but don't control" . A brilliant take away from this young lady who is passionate about using her voice to affect change and raise awareness in South Africa and beyond!

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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 early age. The Montessori system, developed by an Italian woman who's daughter had epilepsy and uses a lot of repetition, was well suited to helping Alexis overcome some TSC related cognitive challenges. She also talks about being bullied at school for her facial manifestations of TSC, for eating "weird food" and coming home "black and blue". Eventually, her mother felt it necessary to home school Alexis and her younger siblings. She narrates eloquently several aspects of her homeschooling experience that prepared her well for passing the necessary testing to enter college. She also highlights how TSC is managed in South Africa, the need for more awareness and access to better treatment. In her blog, "Living with TSC; Never a Dull Moment" she gives more personal glimpses of her challenges and joys and wants to continue to utilize her lived experience to raise awareness and connect with others living with TSC in her home country and worldwide. Her blog titled, "Living with TSC; Never a Dull Moment" can be found at http://theycallmetsc.blogspot.com/. Quoting her blog headline, "Living with Tuberous Sclerosis Complex, may seem daunting, maybe even impossible. But it doesn't have to be... This my story of hope". Powerful, inspiring words from this articulate, brave, humorous and caring young woman. Stay tuned for Part 2!

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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 spectrum and hope that expanding awareness through this Autism Occupant Sticker Campaign leads to broader understanding and acceptance of the diversity within their own community and contributes to increased safety and security for all. For more information, visit their Facebook page (https://www.facebook.com/NewPaltzPolice/), website (http://www.townofnewpaltz.org/police) and check out this recent article: https://spectrumlocalnews.com/nys/hudson-valley/public-safety/2019/05/29/new-paltz-autism-sticker

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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, his children, and wife. He was not officially diagnosed with TSC until he was hospitalized for a blood clot in his lungs and everything he'd been through in his past started to make sense. From that moment, purpose defined, Mark committed himself to raise awareness of this condition and got involved with the TS Alliance. He discusses much of his experience over the years working in particular with the adult TSC community as an adult regional coordinator of 6 states, attending conferences, speaking at local colleges, becoming a TS Clinic Ambassador and more. He's been a ER Tech, group home manager, started a Facebook group for Dads with TSC and still holds regular Adult Topic phone calls and meetings with people across the country. He also shares how his love for singing and songwriting has been a refuge along with spending precious time with his wife, son, and daughter. He shares some glimpses of his interactions with influencing doctors and other professionals, traveling across the country to attend conferences to network and further awareness and connection and is in the midst of writing a book about his vast experiences over the years and how his strong faith has pulled him through. In Mark's words, "take the high road, just try to keep things in perspective. ask God for discernment, and maybe an extra date night for yourself or with your spouse but it can be done if you choose to drop the selfishness and sometimes that's a tough gig"

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