Tag: #Polypharmacy

TSC Talks Guest Roberto Paleco

TSC Talks guest Roberto Paleco joined us in our “virtual land” to discuss his amazing journey and career as a Medical Researcher/Scientist, Entrepreneur, from Australia, Italian born. He started a company to do research and clinical trials “for hire” to bridge the gap in the Australian medical cannabis industry.  Roberto has a passion for nature and chemistry. After years of studying and working in the field as a medical researcher, Roberto decided to work on medical cannabis research entirely, which led him to create ResearchCan. He has a passion for natural medicine, mind-body connection, and chemistry of the body, which made him study different diseases and therapies. He understands that there are people who are suffering and dying that could be helped in different, but simple, ways than the pharma norm.

Roberto mentions the gastrointestinal microbiome. It’s something that I just learned about in probably the last five or six years. As someone who was on a bunch of pharmaceuticals, the impact on the gastrointestinal system was significant. And the mind-body connection, I think that’s something that while it’s taught, it’s becoming more prevalent. People are understanding the microbiome and the gut that connects gut/brain connection.

He developed ResearchCan to make a difference. He mentions it was a hard decision to step out and expose his research, but he also acknowledges that he needs to show the public what he is discovering. Roberto stated that, “We understood the necessity of providing medical cannabis industries with the technology to develop products using pharmaceutical enhancement and medical devices.”

Roberto has an extensive and interesting journey in this field. He explained:

“My passion for natural medicine started during my university studies, where I had obtained the medical and pharmaceutical knowledge to create drugs and the understanding of drug interaction with the human body. As a scientist, I always found the chemistry of the body and the pharmaceutical technologies fascinating. In my career, I studied different diseases and therapies to have a bigger vision of medical treatments. I studied topic formulation to treat skin cancer in Ireland. I moved to Sydney to become an expert on inhalation and nasal administration for respiratory conditions. I have participated in a clinical trial in collaboration with UTS, where I remained fascinated by the connection mind-body studying gastrointestinal conditions. In all of these apparently unrelated conditions and others in my advice, medical cannabis can be used as primary therapy or as a combination to help unavailable and sometimes inefficient conventional treatments.”

“I’ve been aware of the potential of medical cannabis for a long time, and I always tried in my career in Academia to make people understand it. However, nowadays, the barrier is still strong. In the years, I saw people suffering and even die from pathologies that could be treated with this plant. Finally, the world looks like realigning about the use of medical cannabis and I hope one day Australia will lead to this change.”

“My personal experience is that the Academia here is not ready for this change and my advice is that medical cannabis companies should invest money in research and developing medical products privately and directly as pharmaceutical companies always did. Australian universities have incredible laboratories and scientists, but at the moment, there are not sufficient government grants to develop cannabis research within the University, and the old bureaucracy around the intellectual property is discouraging the cannabis industry to invest in research. Besides this limitation, there is here in Australia, a market and a business interest in terms of investment and capability. Government legislation around cannabis prohibition is fast-changing, so I think that with a different approach, we can make the difference.”

Roberto explained the development and creation of ResearchCan:

“I created ResearchCan with a group of friends, all experts on formulation development and almost ten years of experience as medical researchers. We understood the necessity of providing medical cannabis industries with the technology to develop products using pharmaceutical enhancement and medical devices. I decided to create an independent group of scientists to detach our company and research from university bureaucracy and pharmaceutical company control, to be able to deliver cost-worthy research and the access to medical technologies to medical cannabis companies. We hope to become the pharmaceutical research and development partner of a medical cannabis company that has our same vision of this unique opportunity.”

“Our vision is to use medical chosen extracts more efficiently delivered to better target conditions using medical products. Having pharmaceutical formulations to deliver cannabis extracts using different administration pathways can increase the use of medical cannabis. The use of available pharmaceutical technologies will allow the reduction of active ingredients required and a real reduction of the therapy cost, improving the bioavailability and efficacy of the drug. Reducing the cost and creating products with high patient compliance is the key to deliver this medicine and to speed up the change in the legislation that is happening worldwide driven by many patients.”

He also has a vision for the future! He states the following:

“Nowadays, we have access to the technology to prove cannabis’ medical efficacy and to create the pharmaceutical products that the market need.  The use of in vitro analysis can help to choose appropriate extracts to be used to treat specific diseases and conditions. The in vitro analyses are used to develop a treatment for specific cancer types, to develop a formulation to access the brain efficiently to treat epilepsy seizures and to test cannabis for the treatment of chronic inflammation diseases efficiently. The use of in vitro analysis can help to choose appropriate extracts to be used to treat specific diseases and conditions. The in vitro analyses are used to develop a treatment for specific cancer types, to develop a formulation to access the brain efficiently to treat epilepsy seizures and to test cannabis for the treatment of chronic inflammation diseases efficiently. Furthermore, getting scientific proofs and creating medical formulations is essential to help health professionals to prescribe medical cannabis more safely and efficaciously, opening future access to more diseases. As a group of experts in pharmaceutical formulation delivery, we have been developing prototypes for a nebulizer, a nasal spray formulation and a fast-dissolving sublingual tablet to administer the cannabis extract in different dosages and to better access specific targets. Our plan is to create the knowledge and products needed to give millions of patients an alternative that they need.”

One important aspect mentioned by Roberto is that these prototypes are not standard medical formulations, and that is because it needs to be unique for each individual, their different needs, and the individual’s specific body aspects.

Links to Roberto Paleco:

https://www.linkedin.com/in/roberto-paleco-66139417a/

All of our podcasts can be found at https://tsctalks.com/podcast/

Check out our new cannabinoid topical formulated by Mike Robinson: https://thesourcecannabinoids.com/shop

TSC Talks Guest Dani McQueen

TSC Talks guest Danielle, Dani McQueen, is a true champion in the cannabis world, business owner, who has been nominated with Best Cannabis Company of the Year, ​Maine Cannabis Activist, Business Leader of the Year, Champion in Corrupt Responsibility, Best Innovation: Hot Cocoa, and Young Entrepreneur of the Year. While that, she is also a mother of a special superhero little girl that suffers from the same autoimmune disease as she does. Danielle demonstrates her rough path but also her strength to follow her instincts, and as every human being, with doubts and uncertainty but reaches an amazing lifestyle for her family while also helping other families. She shares a story of overcome but also the real struggle as a person who suffers from Ankylosing Spondylitis. Danielle just really uprooted herself and moved to Maine to help her child and herself. I’m just very impressed with what I’ve learned so far. Danielle shares her story timeline with us on the next few quotes.

“I always knew I wanted to help people. At an early age, I also knew something was wrong with me too. I had gotten into a little bit of trouble at school. I love the gymnastics part in flipping and I thought I could do this. But I also started to realize that I was getting pains, you know, and everyone kind of chalked it up until I was probably around 16, when it really started to affect me. By 17 years old I started, you know, I’ve seen every doctor. I’ve been diagnosed with lupus, rheumatoid arthritis, to everything. So, being diagnosed with so many diagnoses, it’s just because it was kind of unknown. It was a little by 18 when they had known that it was Ankylosing Spondylitis and I was put on oxycodone.”

“This next month, I’ll be going into my third surgery, they’ll be doing a full fusion from the cervix down. Just because I’ve had so many slipped discs and fractures that are kind of just deteriorating. So I’m a little nervous.”

“Every time something like this happens I think of my daughter, what her future might look like. Because like I was saying, when I was a teenager, they put me on oxycodone and it helps, of course. Back then, these drugs were just coming to market. These doctors were taught by the pharmaceuticals that these were lifesavers or they were for some people, I’m not denying that fact. But for me, being so young, I probably shouldn’t have been put on oxycodone. Over time, it stopped helping. And at this point, I was in college and I was going to school to be a nurse and now at this time, after oxycodone, I’m put on the fentanyl patch and this I’m using with  the oxycodone. The fentanyl patch and the oxycodone. So now I’m in school and I’m learning in the medical world. And I start to learn that maybe I shouldn’t be on these doses. Maybe I shouldn’t be on these medications. Maybe it’s okay to question the doctors.”

“I was a manager of a Suboxone clinic a few years ago, and I thought to myself, I was no different than these people, except they went to get their drugs from the street; I just had to go to my doctor. She’d write me a prescription and I’d be on my way. I mean, there was no difference to me.”

“I just felt something was wrong. I feel really guilty saying this. One time I’d walked into my doctor’s office to get a prescription. There were a lot of people in police uniforms and there are people carrying boxes and the nurse was really sneaky about getting me into a room. I don’t remember seeing the doctor that day. I just saw my prescription. And I was in a haze. I feel like from 18 to 22 I literally feel like I don’t recall a lot of how I managed to graduate school and do the things I did in that time period, still amazing to me. But that next day I read in the newspaper that my doctor was under investigation for overprescribing narcotics. There were a lot of overdoses in our town at that time. And this doctor was connected to them. Well, next thing I know I’m being called by the board of medicine because my medical records have been found outside of her office being disposed of. So now I’m caught in this, ‘I’m addicted to drugs. who’s going to supply my drugs now. This is so embarrassing. It’s in the newspaper. I’m in the medical field.’ I went through this stage of full-blown depression, I didn’t know what to do on my bed. Thankfully, it was a time of my life- life has given back to me because I had no choice other than to either go to the streets and become a drug addict or detox. And I don’t recommend detoxing at home, but I was too ashamed to go to the same hospital I worked in. And so I detox at home. The worst 14 days of my life. Pain I never felt, sickness and things I’ve never felt before, and I wouldn’t want to ever again. I think that’s why I’ve stayed off of narcotics because that feeling I remember of coming off of them. On day 15 I remember my younger brother offering me a joint and I was mortified. I was like, whoa, how dare you!”

Yeah, the recovery movement. They really were not very pro-cannabis. In fact, I dropped out because they weren’t. I was in an addiction. I was going back to school to become an addiction counselor and they passed around this magazine with marijuana on the front of it like it was the worse thing, and I was sitting there and I had just started using. I felt so guilty and it was helping me and I was getting off meds and I was like, I can’t do this. I can’t get off.

“I get it. I was mortified. And then you know what, I did it because what was the other option? I was so sick, I was so sick, and all of a sudden I feel better, and how do we get more of this stuff? You know? So here I am. I work at the hospital. I’m using my younger brother to go buy me marijuana, you know, like, mortifying, but then I started to realize this is going to help. This is going to be the thing that helps me. And it started to help me and then I started to want to help other people. I got a job at a Suboxone clinic and I wanted to help people. I just thought that I could save the world. Then I started to realize I’m drug testing these patients. They are coming back positive for THC and the doc says, ‘that’s okay, Danny. No big deal. They come back something else that’s a problem.’ And I’m thinking why is this not legal? Why aren’t we just using it? Why can’t we give them weed because here I am… I’m smoking cannabis every day. It’s helping me stay clean, function with my disease, I’m treating these patients, and I’m hiding the fact that I probably smell like it. They thought it was them. It’s me the whole time.”

“Then you know what I got pregnant and there was no more I could hide it. There was no more of ‘I had to be quiet about it’ because Harley Rose, in 2015, early on, started to show symptoms of something and nobody knew what it was. But one day I went into her crib, she was stiff as a board. I picked her up and she was very hard, and her joints were very red and she had a fever of 102 and I knew right at that moment that I had genetically passed down something to her. It was the worst day of my life.  I just thought everything was like flashing. Everything I had gone through and I blamed… I blame myself. Her pediatrician was great. Quickly after the test they found out she had A.S. And right then it was like a whiplash.”

“I was very angry at this point, more at myself. I think Because I just felt like this is all my fault. I gave this to her my child’s gonna have to endure all the same things I have. So I was very scared and then like I said it was like a slide. they just wanted ‘Let’s do this. Let’s do that.’ And I said ‘let’s do none of it! What can I do herbally?”

“The doctors were not supportive of anything alternative. And about a week went by from the diagnosis and I was sitting, probably on a Friday and watching her and her body, she just hurt. You could tell, and I didn’t know what to do. And I had a prescription for pain medication and I was holding it and I just knew, I just knew I couldn’t do it. And within days, you know, we had quit our jobs. We had packed our home up and we had found a place in West Baldwin, Maine. And we didn’t have any jobs here. We didn’t have anything, only the hopes that somebody was going to help my daughter. And we left. We met Dr. Dustin.”

“I probably sounded like a lunatic. You know, I just said ‘please, I know you’re not accepting new patients. I need you to help.’ And within probably 24 hours, 48 hours, there was a callback. We had an appointment within days. We went in and I was terrified because still at this point didn’t want to give her the cannabis. I don’t know. I thought maybe this guy was just going to be able to give her an herbal. I don’t know what I thought. Honestly, I don’t know what I was doing or what I thought. I was so scared. He was so wonderful. He was like this white light come over us and we started her on cannabis and she started to do things you’ve never done before. I’ll never forget the day she took off running, jumped on the arm of the couch and Ninja flips.”

“And I thought, ‘do it again!’ My sisters would look at me and give me that look like ‘you shouldn’t be letting your baby do that.’ But I did I let her do things that maybe you shouldn’t have done.”

“I thought, maybe she’d been trapped, you know. So at that moment, the stigma for myself, you know, here I was, it was helping me but I still was scared to give it to my child. Then I gave it to her. She’s remarkable.”

“That’s when it was like, game on, world! Because if I’m doing everything, teach me how to grow, teach me how to grow cannabis, teach me how to do everything about cannabis.”

“And then I started to help one mom, and then that started to be two moms. And then it just really grew. And I never connected my business name with who I was as a mom helping these women. You know, I never wanted it to be combined. Now I have moms that I helped years ago say to me, ‘did you own this company back then?’ And I’ll laugh because, yeah, I did. But I just wanted them to know I was just like them. I just remember having nobody. I had nobody here. I was so depressed. I had left my mom, my sisters. I was a brand new mom myself. I didn’t know what I was doing. I didn’t have that. We were hours away from everybody we knew.”

We also opened up about the transitions that had to be made because of COVID19. Some of the questions we discussed were, ‘What has been the biggest challenge in the recent Coronavirus? How have you guys gotten through?’ Sounds like they are pretty well versed in their own, boosting their immune system and all the things that we can do.

“To be honest, I was terrified at first. Right at the beginning of it happening she had an EG to go into. We had tests like back to back. And some things that we had to go. So all of a sudden, they were kind of saying ‘you can come if you want to,’ but I’m watching the news, I’m terrified. I kept her inside completely. We couldn’t stop working, sadly. But we would protect herself as much as we could. We change our clothes outside. We would shower right when we came in, but I mean, she still had to go to doctors. So if she was really going to get it anywhere, it would probably be from there.”

Danielle really highlighted something that is important to me and it’s just like the connection that she has with what she’s doing and everything in her life. It seems like she kind of found her purpose and passion. I asked her ‘How do you see the future with your business? Any challenges so far?’

She gladly mentioned how strangers have impacted her life and helped her gather her strength in the hardest times.

“I just honestly want to help people. I just have to. I feel like if anything, my disease, my illness, my daughter’s illness. If it was given to us for any other reason, it’s totally because we can someway change somebody else’s life.”

I think going through something like that where you’re in a situation that really can’t be changed, it presents challenges that are really hard to endure by yourself, it changes you in ways that your whole purpose and meaning kind of shift. I think I’m coming to that kind of conclusion a lot later in life. But you can’t second guess that you go through what you go through to grow through or whatever cliche you want to use, but, I think it puts things in perspective when you look back and I think about the things that didn’t work out and what was down the road that made more sense and kind of brought things together. I can just relate to that. It’s about trying to help my kids and help other people that are just trapped in these disease situations where  they feel there’s no choice but pharma pharma, you know, locked in.

“It’s really sad. I just had a scan done a month ago. They came in I had just had days ago, and they said, like, ‘Danny, there’s 13 new fractures. You have to stop being stubborn and we have to get in there and we got to go operate.’ I’m the worst patient ever on work. But he says to me, ‘I gave you a drug screen. And you really did only test positive for cannabis.’ I start laughing so hard. I go, ‘did you think I was lying?’ And he goes, ‘I don’t know. Yeah, kinda because I thought …How is it that you’re functioning like you are.’ I kind of laughed, but I sent him, ‘I hope this is a learning experience for you that all I have in my system is cannabis. And here you are as a doctor saying, I should not be functioning without narcotics and you thought I was lying.’ And I said, ‘I’ll give you a deal if you want to start smoking cannabis,’ and he started laughing. It’s like that was a learning lesson. How dare you first of all drug test me, I told you I didn’t take drugs. I smoke weed, you know. But you know what? That moment I didn’t get mad about it because I hope the next patient he sees he’s run out of options for that person. He’s putting them morphine, and there’s nothing that’s helping. Maybe something click that says I met this girl one time, that’s way worse than you and all she did was smoke cannabis or eat cannabis and one life can be changed from what he saw.”

Website: https://www.oldmanfarms.com/

Instagram: https://www.instagram.com/oldman_goodies_llc/

Facebook: https://www.facebook.com/oldmangoodiesllc/

Thank you, Amora Correa, for your awesome job writing this blog!  We are thankful to have her as part of our team.

TSC Talks Guest Sherri Tutkus

TSC Talks guest Sherri Tutkus is the founder and CEO of GreenNurse Group, Nursing Director at Irie Bliss Wellness and host of GreenNurse on the Go Radio Show. Sherri is a cannabis nurse, patient and advocate. She earned her Bachelors in Science and Nursing from Boston College. She is highly skilled Registered Nurse with 30 years’ practical experience in various departments within the hospital and home setting. She is utilizing her expert nursing skills as a medical center specialist, clinical nurse liaison and educator to bridge the gap between patients and the cannabis community. Sherri has been educating and implementing holistic integrative healing modalities within her practice for over 20 years. She educates on the endocannabinoid system and the safe utilization of cannabis at dispensaries, hospitals, clinics, patients homes and she regularly does pop up events, seminars and expos. Sherri is an international speaker and she has contributed to the writing of the first cannabis nursing textbook with her cannabis nurse colleagues that will be available in nursing schools across the country. Sherri is a member of the American Cannabis Nurses Association and founding member of The Cannabis Nurses Network and was nominated as one of two nurses for “Health Professional of the Year” for the 2020 New England Cannabis Convention. Sherri brings passion and purpose to her work teaching bio-psycho-social-spiritual healing using cannabis as a tool.

In this episode, Sherri shares from the annals of intensely personal experience detailing how her entire life went from one of a busy full time nurse, working in hospitals in Boston, single mother of three to becoming completely bedridden, dependent on others for care. She states,

“I’m going to be a little bit transparent today. I think it’ll be really helpful to talk from my own personal perspective in working with cannabinoid therapeutics and mental health in regards to my own mental health. So before I got sick in 2012 I had a history of migraines and ADHD-attention deficit disorder. Both of those were managed very well with medications, working full time as a nurse in the big teaching hospitals in Boston, three kids. I was highly functioning. When I took a hit from eating a bacteria while I was working I ended up in the intensive care unit, with a mega colon, an infectious disease, and it was really bad. So I got sick in 2012, took a hit to my gut. I went from high functioning to not functioning at all”

From here Sherri lays out the journey back and how a fellow nurse at a particularly low point after she’d been put on 16 pharmaceuticals and was “circling the drain of despair”, encouraged her to try cannabis as medicine.

“I was on the other side of the bed, like in a really big bad way, all of a sudden I’m the patient and having to advocate for myself. So not only was it the physical issues that I had, but I also had to deal with the system, the system that I worked in, how is that going to affect my mental health and how are they going to take care of me? The trauma that I experienced from this illness is so overwhelming high functioning to not functioning, home- bed bound in the hospital- couldn’t take care of my kids -could barely eat. I’m just gonna say it like it is explosive diarrhea, and nausea, vomiting, abdominal pain, pooping your pants in public. So you can see how literally I can talk about anything. From running around the block naked to talking about poop and stuff that comes out your bum. I was so mortified, horrified that I had this gastrointestinal illness that was debilitating, complete loss of control, it was horrible. And then the issues with eating and being able to take in food. So that spiraled into, mental health issues, the developing anxiety and the depression. And over time, I wasn’t getting better. I had agoraphobia, I was afraid to leave.”

And I’m going to tell you too, and this is the part of trauma that I’m really trying to help patients with now, when I’m working with them because I’ve been there. You know, I’ve been there. I call it medical trauma. And Pharmaceutical trauma.

It was cannabinoid therapeutics that came into my life that really made the significant impactful change, that allowed everything that wasn’t working to start working again and actually allowed me to start processing information from a different place because I was pulled out of the story of the sickness, the story or the trajectory of sickness. an illness. You know, it was the cannabinoids that actually opened the door that allowed everything that wasn’t working to start working again.”

I was utilizing all of the other tools that existed. The traditional system, the holistic system, the functional integrative system, acupuncture, chiropractor, essential oils, homeopathy, you name it, and none of it worked. Why? Because my endocannabinoid system was completely 100% deficient. I was not making enough of my own internal endogenous cannabinoids to keep my system regulated including my brain”

“And so what it took was it was one of my nursing colleagues who had just retired. She was one of my patients because I do energy healing work. I do Reiki and Reconnective Healing and she was one of my clients from energy healing. She had been trying to get in touch with me and she had just turned 70 and I kept blowing her off. So she came to my house with a big giant, big fat joint. And she walked into my bedroom and I looked at her and I go, are you kidding me? I mean, is this a joke? Seriously, you’re bringing me weed? Like, how is this gonna help me?”

There’s much more within this episode as Sherri goes into a lot of detail on various aspects of cannabis as medicine and how it works to restore homeostasis, what this means for so many conceivably impossible to treat conditions, how this has profound implications, for ushering in a new paradigm of modern medicine, bridging the gaps between traditional and alternative medicine with results, research and centuries of “anecdotal experience” evidencing profound efficacy and facilitating personal autonomy and decreased dependence on a broken healthcare system.

For Sherri, these brutal series of experiences were the launching pad for what is now her business, Green Nurse Group and has led to her work as Medical Director of Irie Bliss Wellness. She has the opportunity to help others on their journey with cannabis. She discusses the personal stigma she had to overcome as well as challenges within her own family who were not initially supportive of her foray into the cannabis industry among other potential roadblocks so many of us experience as we advocate for what we know to be true about cannabis. It is a life saving plant that has the power to transform one’s entire state of being.

Sherri and Green Nurse Group as well as many other Cannabis Nurses, Doctors who are slowly starting to embrace cannabis and other professionals with whom Sherri inspires sit at the crossroads of this exciting yet also frustrating time in traditional medicine as the systems we have depended on for so long to help keep us alive and having quality of life are not leading to overall improved quality of life for more than not.

One final quote from Sherri and then be sure to check out her links: “I honestly see this (cannabis as medicine) being integrated into mainstream medicine, but it’s going to happen in the community first. So in other words, as healthcare professionals, a lot of cannabis nurses, including myself, the traditional healthcare system has failed us in multiple ways. Not only were surgeries denied, medications were denied. I had to fight for my for surgical procedures, the mental health system-completely broken. Bottom line is that a lot of systems that we medical professionals, especially cannabis nurses have come from, we’ve come from broken systems, and so we want to make it better. And how do we make it better? We start in our communities by educating and then there’s going to be a critical mass eventually. It’s going to happen and I’ve already seen it …now I’m getting phone calls from more doctors asking, “Hey, what’s the green nurse?” ”

Sherri’s Links:

Green Nurse Group: https://www.greennursegroup.com/
Facebook: https://www.facebook.com/GreenNurseSherri
Instagram: https://www.instagram.com/sherri_tutkus/,

https://www.instagram.com/greennursegroup/
Twitter: https://twitter.com/Green_Nurses
LinkedIn: https://www.linkedin.com/in/sherri-tutkus-rn-bsn-912b7776/
Recent Articel: https://www.bizjournals.com/boston/news/2019/10/10/the-system-is-a-big-fat-failure-access-to-cannabis.html
Recent podcast appearance: http://www.theaddictionarypodcast.com/e/part-viii-of-cannachronicles-with-sherri-tutkus/

Sherri’s previous podcast and all of our podcasts can be found at https://tsctalks.com/podcast/

TSC Talks guest Liz Minda and Mike Robinson Pt 2

TSC Talks guest Liz Minda and Mike Robinson Part 1

In this episode of TSC Talks, I spoke to Liz Minda, RN and Mike Robinson, former TSC Talks guest, drops in for the second half of our conversation. Liz has three children, one of whom has significant special needs and issues related to epileptic seizures. Liz strongly believes her daughter’s issues are pharma injuries and we discuss that and the treatment protocol. Liz had her children later in life; her son was born when she was 48 and her twin daughters were born when she was 50. She had normal uneventful pregnancies and her children were all born healthy. All was well until, at 18 months old, one of her daughters developed a fever after her MMR/DPT vaccine. That was when she had her first seizure.

Liz’s daughter had no further seizures until she was 4. When the seizures came back, they were severe grand mal status epilepticus seizures. Liz hesitated to medicate her daughter because as an RN, she was aware of the difficulty of finding an effective medicine as well as the myriad of side effects anti-seizure meds can cause. When the seizures continued, they eventually started meds which began a cycle of seizures increasing in both frequency and duration. In addition to meds, they put the child on the ketogenic diet. The grueling regimen did not help her seizure activity. Liz was desperate after even the rescue med Diastat began to fail to control the seizures.

Liz got her daughter into the Epidiolex study at Mass General and her daughter’s seizures diminished for a few months, but they returned. When the seizures started again, doctors increased her pharmaceuticals which restarted the med, seizure pattern. Liz grew frustrated with the medical establishment who seemed determined to throw prescription after prescription at them at great financial, physical and emotional cost. She found a neuro-epileptologist who helped her begin weaning her daughter from some of the prescription meds and helped her transition to Charlotte’s Web.

Liz connected with Mike Robinson online and Mike and others in the Compassionate Cannabis world assisted Liz in finding a balanced cannabinoid medicine that worked for her daughter. Mike and Liz discuss Epidiolex and the pharmaceutical interactions which do not seem to be compensated for when using that med. Liver issues can be serious when Epidiolex or any type of CBD is combined with certain medications. Mike shares, “Even though we were using the Charlotte’s Web, Charlotte’s Web wasn’t enough to help us get off. We needed something stronger. We needed the Rick Simpson oil or full extract cannabis oil to get her off. Because we only had you know, once you get down to the minuscule doses of the pharmaceuticals, now you’re really up against you know, fighting seizures, because you go with a really slow business and that’s pretty much where we’ve stepped in, you know, it’s right with the actual compassion provision.”

Both Mike and Liz believe vaccine injury is real. We ask you to keep an open mind while listening. Before you form an opinion, walk a mile with Liz and Mike, hear their stories and then decide. Liz comments, “and then people say, vaccines don’t cause autism? Yes, they do, and here’s why. When the brain heats up and you get a fever, you’ve got brain on fire” and she believes that “brain on fire” condition causes both seizures and autism.

TSC Talks is presenting this narrative and these views do not necessarily represent the views of TSC Talks. We are encouraging you as listeners, to “walk a mile” in Liz’s shoes and understand the vast variability in the human genome which calls for a far more personalized approach to medicine than is currently the status quo.

Liz’s Links:
https://en.wikipedia.org/wiki/Brain_on_Fire
LinkedIn: https://www.linkedin.com/in/liz-minda-98b9b1126/
Facebook: https://www.facebook.com/profile.php?id=100011148612874
https://www.mikesmedicines.com/medical-marijuana/liz-minda-and-her-fight-for-jadyn-cannabis-for-epilepsy/
https://herb.co/news/health/rhode-island-cbd-school-minda/
https://digboston.com/medical-cannabis-special-treating-yourself/
https://www.wpri.com/news/special-reports/family-fights-to-change-law-says-medical-cannabis-should-be-administered-in-school/

Mike’s Links:
https://mikesmedicines.com
https://globalcannabinoidrc.com/
https://carouselchallenge.com
https://genevievesdream.com
https://nanobles.com
LinkedIn: https://www.linkedin.com/in/mike-robinson-~-cannabis-heals-256b3192/
Facebook: https://www.facebook.com/MikesEpilepsy
Instagram: https://www.instagram.com/cannabismymedicine/
Twitter: https://twitter.com/MikeRob47354384, https://twitter.com/MikeRob23307223
https://hightimes.com/culture/genevieves-journey-how-cannabis-helped-save-life-create-family/
https://www.imedpub.com/proceedings/cbn-the-cancer-fighting-cannabinoid-5528.html

Thank you Liz and Mike for this valuable discussion.  You can find all of our podcasts at https://tsctalks.com/podcast/

 

TSC Talks Guest Brooke Alisha

TSC TALKS GUEST BROOKE ALISHA

I had the extreme honor of interviewing Brooke Alisha, TSC Advocate, Parent, Adult living with TSC, Adult Regional Coordinator for Adult Support Region 5, LeVel Promoter. She has quite a story of challenges and hurdles, traumatic events, and heartache but also MUCH resilience, inner fortitude, a heart of love and hope.

Diagnosed with Tuberous Sclerosis Complex (TSC is a condition that causes benign tumors to grow in different organs of the body) at the age of 18, Brooke gives us a picture, “I was very active. I was a cheerleader. I was in a precision ice skating team. I was very active in my church. I was in a traveling singing group. We had so many things. So for me, my life was.. always on the go and involved in something, a part of something and suddenly, I was on Darvocet and it literally brought me to my knees. I was in the middle of hair school. I had just started after I graduated. And I missed three months. I had to take medical leave because I couldn’t get up. I was afraid to hurt my kidneys and the stent and that whole thing and then on top of it being on that medication. That was the start of everything really for me.”

She talks of the utter devastation that followed post-diagnosis, “you looked at Google, you know, or Web MD or something. And it was like, awful. And I’m like, how can my life go from this to this? How am I supposed to (go on) and that it just made it worse”?

After moving in with her boyfriend and withdrawing, there was more challenging news, “And so when I went to go see about the cysts on my ovaries, I actually found out I was two months pregnant with my daughter. So I did have this on my ovaries, but they’re like, um, you’re pregnant, and we’re going to put you on Prozac because we don’t know if you’ll handle the baby or if you’ll keep it or anything”

To make things more challenging, she now had doctors weighing in, “She told me she advised an abortion and I wasn’t okay with that. It wasn’t how I grew up personally. And I thought, there’s a reason I’m having her. So, I’m going to just have her and I’m going to get through it. And if I lose her, then it’s meant to be I had to live with myself personally.”

Her baby daughter started having infantile spasms at 4 months and was diagnosed with TSC. She gives us a look at the inner experience of these circumstances and more challenges, “I guess I was so young, you know, I was scared to death of what was to come and she had just got diagnosed with Tuberous sclerosis complex, she has the seizures and they started to get more intense. And they were up to about 10 to 12 times a day, we started to have to digest that. Then I found out I was pregnant with my son, so it was a lot.”

Listening to Brooke and reflecting on my own experience, “I can relate to some of that, you know, I was getting pregnant and finding out at while I had other kids with TSC, and you know, I think back on those times that I don’t remember the details. It’s like talking to you, I just kind of remembered that craziness. You know, it was always like kind of living through at the moment and getting through the day and, you know, putting out brush fires one thing after the other, so I don’t know if it was like that for you, but I didn’t have a lot of like time to really reflect on what was happening and how I was. It was just so much action-reaction.”

Brooke shares more of her experience with her daughter, “she had brain surgery, a lot of people know the intensity of that, it’s a six-month thing. To get tested and all of this stuff done and, you know, it kind of all becomes a blur and then you spend about a month in the hospital because they’ve got to do two surgeries. And we did get social security disability income for that month that I was off, but it was exhausting. I had a son at home. She wasn’t going to the bathroom by herself. They told me about the social regression, they removed her right frontal lobe of the brain, all the executive decision making”

She also discusses waking up to an understanding of TAND, Tuberous Sclerosis Associated Neuropsychiatric Condition, both personally and with her daughter. 80-90% of individuals with a diagnosis of TSC will have some degree of TAND, manifesting in a myriad of different ways, encompassing the entire mental health diagnostic umbrella!

“And you just fix it and you figure it out. But you know, for the longest time, everything would defeat me. Because, you know, for me, 80% of people with TSC have a mental illness, TAND is something I didn’t even know what it was, and I feel like it’s not talked about enough. It’s not expressed enough. It’s not shown to families like okay your child might have TSC but look out for TAND, they need to be prewarned for this because you have no idea it will come hit you like a bus.”

Here’s an excruciating narrative outlining a TAND incident, “It seems like with these medications, so for her anti-psychotics make her psychotic. And we were like afraid to drive home. We were hoping a cop saw us and said let me take her from you. I have never been that mom that wishes anything on my children ever, ever ever in my life. I know I talked previously about not dreaming of being that mother or that Betty Crocker person, but I definitely am a person that when I have something, I go all out and I go all in. If I’m going to take care of something, I’m going to take care of it the way it needs to be taken care of. How do you take care of that? I didn’t know how to take care of that situation. That moment. Everybody’s lives are in danger. My son was being choked from the back. It was very traumatic.”

So clearly, Brooke is a survivor, with resilience like no other. She narrates example after example of circumstances that are unimaginable and yet she continues to rise.

“And you know, for the longest time I lived as that victim like …victim, victim victim and I decided I wasn’t going to live there anymore. And once you decide that you must be at a really big place where you’re like, you know, I’m ready. Because you’re going to get tested and you’re going to get tried, and it’s going to try to break you, but you have to just rise up really. But you have to be at that place, and I can’t tell you how to get there other than feeding your mind with happy things and good things. I started working out. So I started to try to do things that would help my mental health I went seek counseling. I just I started to really like being a hairstylist too, you’re also a therapist. So, you need to have an out. I needed a healthy out for sure.”

Brooke uses premium nutrition, continues to consult with her doctors, and this system has worked for her, Thrive, “a premium lifestyle plan to help individuals experience and reach peak physical and mental levels” and has great results. She continues to promote this product as a side business to supplement her work as a hairstylist/beautician and focuses on helping people feel beautiful inside and out. Having the opportunity to give her clients a little bit more in terms of offering a product she has had success with and believes in has been a wonderful way of infusing her work with her own lived experience and positive energy.

This episode is chock full of inspiration and hope despite multiple and ongoing challenges. I’ll leave you with this final quote, and encourage you to listen and share this incredible testimony to the power of the human spirit, faith and deep passion and love for her family, friends, committed to doing her best to push the needle of knowledge, education, and support for those living with TSC forward daily!

“I mean, there’s been lots of like little miracles, you know, like as you go on, like, Oh, she can read now. And for me, my tumors went from four and a half centimeters down to nothing. So yes, so that’s been amazing, but just the miracle of being 36 now and being told at 30 I’d be in a wheelchair like that’s a miracle. And when people see me and do that stuff, I want them to know that it’s never too late. You still have a life to live!” Bravo Brooke!

Brooke’s links:
Instagram: https://www.instagram.com/_brookealisha_/
Facebook: https://www.facebook.com/brookey21
Twitter: @BrookeAlisha
Adult Regional Coordinator-FB group: https://www.facebook.com/TsAllianceOfOhio/
TS Alliance Regional Coordinators: https://www.tsalliance.org/individuals-families/adults/adult-regional-coordinators/
Brook’s hair services: https://www.facebook.com/brookesbliss13hair/
https://www.facebook.com/thecolourpalettesalon/
Thrive/Le-Vel: https://brooke2330.le-vel.com/

TSC Talks Guest Brooke Alisha

Thank you for listening.  All of our podcasts can be found at www.tsctalks.com/podcast/