Tag: epilepsy

epilepsy

TSC Talks Guest Mike Robinson, GCRC Founder

 

TSC Talks guest Mike Robinson, Founder, GCRC, Global Cannabinoid Research Center, discusses his work developing a number of publications designed to harness and consolidate much of the multitude of cannabis content available all over the internet.

Mike’s Bio from https://mikesmedicines.com: “CONTACT MIKE: HIS BIO & OTHER PUBLICATIONS
To make contact: Email Mike 50kreasons@gmail.com Instagram @Cannabismymedicine

Mike on LinkedIn: https://www.linkedin.com/in/mike-robinson-~-cannabis-heals-256b3192/

Best Bet – Check him out at the Global Cannabinoid Research Center. If you or someone you know has a story of how cannabis has improved your life and you’d like to share it, please reach out to Mike at 50kreasons@gmail.com! https://globalcannabinoidrc.com/

Mike Robinson, the founder of the Global Cannabinoid Research
Center in Santa Barbara California, 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 International Relations and Diplomacy. Robinson has an extensive history of leading a large compassion program that provided countless disadvantaged cannabis patients with various alternative protocol treatments, is a published journalist and international cannabinoid research specialist, is a former registered Civil Rights lobbyist and non attorney that represented countless disabled children pro bono nationwide for over 2 decades. He’s a past board member of Big Brothers and Sisters, the founder of multiple non profits for disabled children, and is well known for adopting a severely disabled child, Genevieve, from the compassion program he once ran.”

Time Stamps:
Introducing GCRC Publications (3.58)
Why he felt the need to create publications (4:41)
Looking for writers (7:18)
Examining the wealth of info and putting it into publications (11:59)
Medical education course (14:37)
Discussing ADA lobbying (20:45)
His biological daughter’s birth during the time he was in a racing wreck (25:13)
Cannabis brings back his memory (29:15)
Evolution of his writing (35:47)
Send in your stuff even if it’s not perfect (37:45)

https://tsctalks.com

 

TSC Talks TSC and Covid

TSC Talks talks TSC and Covid.  Guest host Daniel Price joined Jill Woodworth for a roundtable discussion with guests Rob Grandia, Emilie Peters, Heather Still,  Meghan Bittner, Joshua Stroup and Cathy Evanochko.  Check out the time stamps below to find the information you feel will be most helpful and check out the links at the end of this document.

Link to A.I. Transcription of the entire episode: https://otter.ai/s/QagpwwA0SPSIP-kaJs9Sng

Meghan shares that her doctor believes she had Covid very early on before we knew it was in the US.  (6:53)
Heather discusses what happened when her young son was admitted to the hospital for monitoring of seizures and how Covid complicated that.  (8:46)
Kathy discusses what it was like for her in Canada when Covid first hit.  (10:24)
Rob discusses what it was like to be on Capitol Hill in D.C. advocating for TSC support from politicians who obviously knew the seriousness of the virus (11:17)
Josh and Emily discuss how difficult it is to find a job right now as new college graduates (13:24)
Daniel discusses being furloughed from his job and how covid has impacted him.  (15:20)
Jill notes that her life has not changed that much due to Covid (17:02)
Meghan discusses facing a serious health challenge during the shutdown.  (18:28)
Rob discusses telehealth and its benefits and limitations.  (21:27)
Josh speaks about his fear of going to hospitals for routine care at this time.  (23:34)
Emily does not like telehealth visits and prefers seeing her doctors face to face in person. (24:32)
Heather and her children became sick with Covid.  (25:48)
Kathy speaks about the disruption of care due to Covid (26:33)
Meghan shares about being in Minnesota and having life and medical care disrupted due to the racial justice riots and protests.  (32:13)
Further discussion about telehealth, its benefits and its shortcomings (33:58)
The challenges of remote learning (37:23)
Discussion of stress, anxiety and mental health concerns during Covid. (47:01)
Stress and seizures (51:23)
TSC, stress and covid, we are used to adjusting (53:23)
Rob discusses the additional layer of stress caused by wildfires on the west coast (58:51)
Meghan discusses the riots and protests in Minneapolis (1:00:46)
Emily discusses the difficulty of being a new college graduate seeking a job (1:02:17)
Daniel, also on the west coast, talks about the widfires and the additional level of physical and mental stress they cause (1:05:34)
Kathy finds the blessings during Covid (1:06:25)
Rob misses the normalcy of going on dates with his wife (1:07:58)
Megan and Emilie talk gratitude (1:09:56)
Finishing up with one word that sums it up for everyone (1:14:07)

Rob Grandia Links:
https://www.tsalliance.org/individuals-families/adults/adult-regional-coordinators/ https://www.tsalliance.org/about-us/our-leadership/                   https://www.pe.com/2016/05/19/health-walk-helps-fight-disease-that-attacks-internal-organs/ https://www.facebook.com/rob.grandia.3

Daniel Price Links:
Facebook: https://www.facebook.com/daniel.price.1694
Instagram: https://www.instagram.com/pricendaniel/
LinkedIn: https://www.linkedin.com/in/daniel-n-price-7270156a/              https://www.tsalliance.org/wp-content/uploads/2019/06/06-June-Adults-with-TSC-Newsletter.pdf     https://www.rareiscommunity.com/2019/11/27/navigating-a-forever-home-with-a-rare-disease-daniels-story/

Cathy Evanochko Links:
Facebook: https://www.facebook.com/cathy.evanochko                            https://www.tscanada.ca/about-us/board-of-directors/                                   https://www.raredisorders.ca/about-cord/                                                         https://www.tscanada.ca/about-us/

Emilie Peters Links:
Facebook: https://www.facebook.com/emilie.n.peters                                                Instagram: https://www.instagram.com/emilie_peters_/                                          LinkedIn:  https://www.linkedin.com/in/emilie-peters-95ba421a3/                        https://prezi.com/p/pflgttwujtiq/what-is-tsc/

Heather Still Links:
Instagram: https://www.instagram.com/hstillwaters/                                                  LinkedIn: https://www.linkedin.com/in/heather-still-478a9991/

Joshua Shoup Links:
https://www.timesonline.com/7b8a15ce-62c5-11e7-8fcb-ffa59dd8ad56.html        Facebook: https://www.facebook.com/joshua.shoup.3                                                LinkedIn: https://www.linkedin.com/in/joshua-shoup-88777a1aa/

Meghan Bittner Links:

Thanks for tuning in! We hope to produce another “TSC and COVID Convo” in early January. If you are interested in participating, contact TSC Talks on any of our social media channels or click here.

TSC Talks Special Ed and Covid19 with Mike Robinson

In this powerful episode, Mike Robinson, Founder, Global Cannabinoid Research Center, Cancer Survivor, Cannabis Advocate AND former registered Civil Rights lobbyist and non attorney that represented countless children with disabilities, discusses what’s happened with Special Education services under a provision of the coronavirus relief package and why it’s important to take action.

Under a provision of the coronavirus relief package that passed at the end of March, Betsy DeVos had until Monday to recommend any additional waivers of federal education law to Congress. Already, states have been able to apply for waivers to skip annual tests and change how they spend certain federal education dollars. She issues no waivers.

NO STATE has been given the authority to NOT educate special education individuals in the same manner they would regular education individuals or to make the same allowances, as per the Individuals with Disabilities Education Act (IDEA).

https://edsource.org/2020/education-and-coronavirus-whats-the-latest/625119
Education and the coronavirus crisis: What’s the latest?

Under the federal Individuals With Disabilities Education Act, or IDEA, school districts must offer all students an equitable education or they are not supposed to offer it to any of them. Not many school systems have come up with a way to extend online learning and other critical services to the 7 million children with disabilities across the country. And some districts, because they cannot provide special education services at home, aren’t offering online instruction to any student. Now, there is tension between groups that advocate for these students — who each have an Individualized Education Program or IEP — and organizations that represent special education administrators. The advocates are demanding that school districts deliver education equitably, as the law requires, while administrators say they cannot do the same things they did when schools were open and need some flexibility.

Education Secretary Betsy DeVos won’t recommend giving school districts the option to bypass major parts of federal special education law, the department announced Monday. The move will be celebrated by disability rights advocates, who had feared that giving districts any wiggle room could pave the way for a more permanent undoing of civil rights for the country’s nearly 7 million students with disabilities.

https://www.chalkbeat.org/2020/4/27/21239124/no-special-education-waivers-betsy-devos-congress-recommendations-idea

To file a complaint with OCR: https://www2.ed.gov/about/offices/list/ocr/docs/howto.html
Questions: https://www2.ed.gov/about/offices/list/ocr/qa-complaints.html

Thank you Mike Robinson for your advocacy and education on this crucial action that can and should be taken by any and all for whom special education services have been stymied or non existent.

Mike’s Links:
https://mikesmedicines.com
https://genevievesdream.com
https://globalcannabinoidrc.com
https://carouselchallenge.com

To contact Mike about the MILLION MILLIGRAM CBD GIVEAWAY: 50KREASONS@GMAIL.COM
For more information on “Mike Drops” stay tuned and check out https://tsctalks.com/tsc-talks-new-product/
For The Mike Drop on TSC Talks: https://tsctalks.com/special-contributor-mike-robinson/the-mike-drop/

IF YOU HAVE ADDITIONAL QUESTIONS OR NEED HELP COMPLETING A COMPLAINT, PLEASE FEEL FREE TO CONTACT US https://tsctalks.com/contact-us/

TSC Talks The State of Relationships

TSC Talks The State of Relationships and Special Needs

A frank discussion with John D. Brigham, partner/boyfriend of the host of TSC Talks, Jill Woodworth on his experience moving in with our family dealing with extreme circumstances TSC related, trauma-related. How we made it work and how we’re coping now. We will cover TAND, behavior management issues, relationship challenges, and strategies, cannabinoid medicine and coping. All are welcome, participation encouraged. JD Brigham is from way up north in VT, has a background in healthcare IT, has a son from a previous relationship, a long time cannabis enthusiast and one of the most incredible humans I know.

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/