Tag: #CannabinoidMedicine #Cannabis #MedicalMarijuana #Nursing #Headaches

TSC Talks Special Broadcast: The Tower of Babel Pt 2

TSC Talks Special Broadcast: The Tower of Babel, Pt 2 brings Brooke Alisha back to talk with host Jill Woodworth about parenting teens and young adults with TSC. Group homes are an option and Brooke and Jill discuss the pros and cons.

TSC Talks Special Broadcast: The Tower of Babel, Pt 2 brings Brooke Alisha back to talk with host Jill Woodworth about parenting teens and young adults with TSC. Group homes are an option and Brooke and Jill discuss the pros and cons.

Brooke has had huge success utilizing Thrive-THRIVE Experience is an 8-week premium lifestyle plan, to help individuals experience and reach peak physical and mental levels. Brooke is a mom, TSC advocate, Adult Regional Coordinator for the TS Alliance, and a hairstylist. Check out her Facebook here: https://www.facebook.com/brookey21

Jill Woodworth. (Human being. Writer,) Podcaster. Chronicler of being human. Parent of 5, 3 of whom have Tuberous Sclerosis Complex (TSC), each with varying effect. Committed to giving voice to the underdog, the oppressed, those for whom being heard is crucial to survival and quality of life. If you are part of my world, which is everyone willing to take an honest look at their lives and discuss how the direst and most desperate of situations often lead to the most understanding and personal growth and compassion plus an inner motivation to work toward social good, then join my network! Let me know if you have a story to tell or if you need help to connect with this growing market. Contact me on linked in or drop me a note on https://tsctalks.com or pjlacy6@gmail.com. Offering podcast sponsorship, advertising, consulting, research, speaking and more.

Here is an excerpt from the transcript, click link for full transcript: https://otter.ai/u/Y6Z9mem7vmGFueMlLMBQnPsaV34

“We’ve done our best to advocate and support our daughters, we’ve had to make tough decisions, lean on mental health services to keep them safe, preserve our own safety. And sometimes these choices are sorely inadequate. Sometimes our resources run out before we can get our loved ones into a situation where they can take advantage of supports and services and start to forge their own lives. Sometimes group homes are a good option, and ideally should be a good option for more. But again, we are dependent, or they’re dependent on funding and disconnects between providers and often not able to implement and implement enough surrounding support services that would enable individuals to be more successful learn from the group home living situation and move into a less restrictive environment. So, you know, I think my point is that I think they can work. I think there’s a lot of challenges. So Brooke, why don’t you go ahead and give me a little bit of your background and talk about your experience.”

“Okay, I know this is part two. So if you watch part one, you can hear a lot. I mean, we could re-share that somewhere. So speaking on that I was diagnosed at 18 with TSC. And I had kidney tumors, basically was dealing with a lot of kidney stones, urinary tract infections, that type of thing at the age of like, 17ish, probably a little bit after my hormones got to use, you know, used to my body, and were like, Hey, we’re not gonna let you do life anymore. I was a cheerleader, ice skater, singer traveling singing group for a Christian. It was called Youth for Christ, stuff like that. I was very, very involved in a lot of things. So for me to be told at 18 I’d be in the wheelchair by the age of 30 was very detrimental to my mental health. Being told I could never have children. If I did, my body would fight the fetus off. So I just gave up and like, honestly, I was in Darvocet in the basement, and like watch real world and just said My mind was just junk. Because I just like might as well live vicariously through someone else. Since I can’t leave my basement.”

“Moving on, I ended up getting pregnant have a daughter with Tuberous Sclerosis Complex at the doctor, I was told that basically, you should have an abortion because your body will fight the fetus off anyways. But for me, I chose not to everybody has a different view on that. And that’s fine. But that’s something I wanted to have to live with. And then having her she was good for about the first four months. And you know, it’s just, it’s a whole long story when you have to see and I could break down every single little bit of our lives. But I then was pregnant for my son after she started seizing and went to Canada for infantile spasms. I mean, if you I know we’ve all been through a different differently. We’re on a different boat, Jill has different stories with her children that I’ll have with my daughter. But listen, that boat was sinking”

They also discuss alternative medicine options that they each have utilized and for which they feel strongly can be useful for those living with TSC and other chronic life-threatening conditions. Long term polypharmacy issues are incredible and waiting for pharmaceutical formulations of cannabis is not an option. We are witnessing suffering and mental/physical health issues that can be addressed in part through other modalities. Jill is a strong advocate for affordable access to cannabinoid medicine for those living with TSC and others who are dependent on funding and disconnects between providers and often not able to implement and implement enough surrounding support services that would enable individuals to be more successful learn from the group home living situation and move into a less restrictive environment.

Brooke’s links: https://www.instagram.com/b3mor34u/
YouTube: https://www.youtube.com/channel/UCdP1KUfMBhO2l4bDHaciM0w
Jill: https://linktr.ee/jillwoodworth

TSC Talks Guest Blaze Therapeutics

TSC Talks Guest Blaze Therapeutics

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 and 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 includes, you know, the spices that we use to season our foods and a lot of our spices have silicone in them. And a lot of our chronic pain is caused by all the different products that have so many toxins that are building up it’s increasing our inflammatory system, our bodies are trying to fight all these toxins. It’s incredible what we found”

Discussing the role of big pharma and the open CBD market:

“Big Pharma and responsible players from the open market industry can collaborate and work together. When it comes to educating the public and the healthcare industry, doctors need to know what options are available to them and the unfortunate risky realities of the open market so that they can best advise their patients. And consumers need to know that they need to consult with their doctors to identify their personal dosage of CBD, what to ask for and what to avoid when navigating the open market in order to avoid purchasing toxic or fraudulent products”

Regarding the controversy with newly FDA approved CBD isolate medication, Epidiolex:

“And so one of the hot topics that has been circulating the rate of the space currently regarding Epidiolex include sucralose as an inactive ingredient. Because of this, we’re seeing some parents and patients with rare epileptic conditions choose to turn to the open market as opposed to taking Epidiolex either on label or off label because of the sucralose, which is an artificial sweetener found in the formulation.”…” sucralose significantly decreased beneficial gut bacteria, negative effects have occurred at a sucralose dosage as low as 1.1 milligrams per kilogram, and FDA acceptable daily intake for sucralose is five milligrams per kilogram, so several individuals with GI issues do their best typically stay away from this artificial sweetener”

Continuing this conversation and discussing how doctors can take advantage of what Blaze Therapeutics has to offer:

“So for those practitioners in states with medical marijuana programs, of course, they can manage medical marijuana patients, they can prescribe Epidiolex to patients with certain types of severe epilepsies or they can choose to responsibly distribute CBD by signing up as a wholesaler at Blaze Therapeutics and selling CBD directly to the patients in the office or they sign up under our referral program, the and they receive they receive a percentage of the revenue per order that’s made.”

On New Love Ventures, LLC:

“So a little plug in there for new love ventures and basically what we’re doing with new love ventures. It’s a new love culture, it’s a social movement to help people bring awareness to themselves and being human, you know, looking out for their, their fellow person, regardless of what they’re doing in their lives and what they believe in”

There is a large amount of detailed but well-explained information contained in this episode. A final quote on how we as patients can ask doctors to enter the conversation which is of utmost importance:

“Can you please reach out to blazetherapeutics.com and the people there or just call that company and then we will help educate them in an expedited, then we understand their busy schedules, we will provide them with the materials in order for them to learn what they need to do in order to help their patients. Right now the stigma within the health care community has dwindled. There’s enough clinical evidence out there for cannabis. So now doctors are actually learning ”

Thanks for listening! For more information, see the following links:

Website: https://www.blazetherapeutics.com/
Website Resources: https://www.blazetherapeutics.com/resources
Facebook: https://www.facebook.com/blazetherapeutics/
Instagram: https://www.instagram.com/blazetherapeutics/
Twitter: https://twitter.com/blazetherapy
LinkedIn: https://www.linkedin.com/company/blaze-therapeutics/
New Love Ventures: https://www.newloveculture.com/
Nadia on LinkedIn: https://www.linkedin.com/in/nadiabodkin/
Vincent on LinkedIn: https://www.linkedin.com/in/vincent-crowley-a87a1a55/
Nadia Bodkin Rare Advocacy Movement: https://www.rareadvocacymovement.com/nadia-bodkin

Thanks for tuning in!

TSC Talks Guest Nikki Lawley

TSC Talks guest 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 that’ll help. And then it comes back by again. What the hell? So, my husband came back from a walk because he said I literally can’t stand to be around you. I have to get out of the room. Yeah. So I mentioned to him when he gets back, I’m like, there’s this billboard, “get your weed card”, you know and he said do it. He said, “Do it like just do it now. Let’s do it.”

Nikki was finally able to find some relief with some guidance and using particular strains of cannabis that she has only been able to find in Nevada and Canada. The cannabis took her pain from a daily level 7/10 to a 2/3 on the pain scale. However, it has been incredibly frustrating not to have access to the strains of cannabis that actually work in her home state of NY due to restrictive regulations. Nikki often travels to Nevada and Canada to find the right strains that give her the relief that allows her to function.

Throughout this journey, despite hitting some true “window ledges” where she didn’t know how she was going to go on, she’s come back to being a passionate and eloquent advocate for TBI survivors, sharing her story of hope and the amazing potential of the cannabis plant every chance she gets.

“What I do now is I just started sharing my story. I sent it to Mike (Mike Robinson, Cannabis Advocate/Activist) and I have a very good friend Rachelle Gordon, who is a writer for financial cannabis news. And she kind of helped me lose some of the rambles and make my story more concise. And then I said to Mike, “I don’t know do you think this is worth having more exposure? Do you think people want to hear about this?” You know, I’m not trying to be famous in any way shape or form. I’m just trying to promote awareness.”

For Nikki, while cannabis has provided relief, she still struggles with misunderstanding and judgment because injuries related to TBI are invisible. Sharing this final quote here;

“But you know, if nothing else, since this injury, I’ve learned so many things about chronic illness, and how, how much is misunderstood about it. And just because somebody doesn’t have a broken leg or isn’t in a wheelchair doesn’t mean they’re not disabled, it doesn’t mean that they’re not challenged in some way. If I use my parking sticker, it’s usually when it’s icy out, and I met a huge risk fall risk. So I still suffer with dizziness and balance issues and depth perception issues. I feel guilty that as the person using that sometimes, and I shouldn’t.”

There’s a lot more in this episode you don’t want to miss! Thank you Nikki Lawley for the inspiration and education on TBI, cannabis and dealing with life!

Nikki’s links:
LinkedIn: https://www.linkedin.com/in/nikki-lawley-aa281517/
Facebook: https://www.facebook.com/nikki.lawley
Instagram: https://www.instagram.com/lawleynikki/?hl=en
Recent podcast: https://player.fm/series/coffee-party-usa-radio/i-want-access-4-all-nurse-nikki-lawley-stops-by-for-a-cup-of-joe
Blog article: https://www.mikesmedicines.com/medical-marijuana/cannabis-shopping-with-nikki-lawley-everyone-is-unique/
Nikki’s book suggestion: https://www.amazon.com/Medical-Cannabis-Primer-Ushering-Marijuana/dp/1885176023

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TBI One Love: https://www.tbionelove.com/single-post/TBI-One-Love-Survivor-Nikki-Lawley