TSC Talks Guest Ruth D. Fisher

TSC Talks guest Ruth D. Fisher

I thoroughly enjoyed having Ruth D. Fisher, PhD, Cannabis researcher, and analyst, Co-Founder of Cann Dynamics, as well as the author of The Medical Cannabis Primer, on TSC Talks! I heard about Ruth’s book from another recent guest, Nikki Lawley and promptly ordered it, and reached out to Ruth for an interview. It’s a phenomenal resource, one that I have on my desk and refer to frequently. Before I launch into the episode notes, here’s a great description of the book written by Dan Larkin, that I found helpful:

“Getting clear, concise, and easy to understand information about cannabis is tough. There are lots of resources, but which ones can you trust? How can you be sure the information isn’t biased? How are you supposed to even understand all the terminology and science? Is it even legal?

All of this becomes doubly important if you’re researching medical cannabis as an alternative to conventional treatments or pharmaceuticals. You or someone you love may have recently been diagnosed with cancer, epilepsy, autism, MS, or PTSD. You may have been dealing with chronic pain. Whatever your personal reason, you deserve access to clear, concise information about medical cannabis….That’s where “The Medical Cannabis Primer” by Ruth D. Fisher, PhD and edited & designed by her brother, A. Arthur Fisher, comes in. They’ve assembled a comprehensive, easy to read compendium of cannabis knowledge that’s full of unbiased information and easy to understand charts, graphs, and images.”

Ruth shares that it was through the process of helping her brother, who was diagnosed with Multiple Sclerosis, find adequate treatment, that she ended up researching cannabis. Raised by a father who was a private practice physician, a successful children’s eye doctor, and Ruth’s idol, she speaks of his influence, “My dad was also an iconoclast, he didn’t take things at face value, just because people said so. He did research in his area of medicine, and he questioned authority. And he encouraged us to do the same. He would send us stuff to read a lot. And he would send an article and say, “read this article.!”, I’m like, “Dad, just tell me what it says.” He says, “No, I want you to read it yourself”. And that was always a pain. But at some point, I realized he didn’t want to bias, the presentation of the information with his view and his perspective. He wanted us to read it for ourselves and develop our own perspective or interpretation on what we thought of it. I always thought that was very interesting. It took me a long time to appreciate that”

Another formative factor Ruth mentions as shaping her life view was graduate school. “I’m an economist. In economics, you learn that everything is supply and demand. So, you learn how you know all markets are shaped by the forces of supply and demand and you kind of understand things in those terms…. What’s really interesting, and it what was finally drummed into me is that when you read a study, that it doesn’t matter what the results are. If your data and methodology aren’t valid, if they’re not found, then the results don’t matter. They’re meaningless. That was really, really important in forming my attitudes about reading research and trying to evaluate whether or not I should consider them to be valid, based on the methodology and the data used. And it really, really impressed upon me the importance of good methodology in order to provide valid results.”

Here are a few quotes from the transcript of our interview highlighting Ruth’s entry into the cannabis industry and her realization that educating herself was necessary, “So I got into cannabis about four or five years ago. My brother started having health problems. And it turns out he was eventually diagnosed with multiple sclerosis. And MS manifests itself differently in different people and the manifestation he gets is pain, a lot of neuropathic pain from different sources. And he was on a lot of different drugs trying to control or manage the pain and they all have really, really ugly side effects. And while they were helping some they weren’t really doing enough. And my brother’s neurologist said, you know, maybe you could use benefit from cannabis.”

“So, I will say that, yes, I had also smoked cannabis or pot in college and decided to, you know, wasn’t my thing. And I knew that it was out there in the medical world, but really didn’t pay any attention to it. I come in now, and the situation is, my brother has a lot of pain. He has chronic pain. And all I know is I want to do anything I can to help him minimize his pain. And so, I go into cannabis and my job as I saw it was to go in and figure out if cannabis was for real, and if so help him figure out what would help him. And so my goal here was to cut through all the BS and I didn’t care what anyone had to say whether they were pro or anti, all I cared about was finding something that would help reduce my brother’s pain. So, I drew upon all my past experiences in approaching things and I started reading…the first question was, well, what is cannabis and how does it work on the body? And I started reading about that and wow, it was kind of overwhelming.”

Ruth explains the challenges to finding well-rounded information and unbiased research on cannabis for multiple reasons and goes into detail on why this is so. Here’s one quote elaborating on this issue:
“In 1937 with the Marijuana Tax Act, the funds for research essentially dried up, not fully -there was a trickle of funding- but they largely dried up, except for NIDA. And so, you had this, and then in 1970, with the Controlled Substances Act when cannabis was officially categorized as a schedule one drug, all of a sudden, there’s this one department within the National Institute of Health that had all this money to study the bad effects of cannabis. If you want to study the good effects, then it’s really hard to get funding and it’s really onerous. There’s a lot of restrictions, you have to file with the DEA and get permission from them. You have to go through all these hoops with the government. It’s really difficult and it’s really stigmatized. You know, it could hurt your career if you do this.”

She summarizes the state of research, “when people in the healthcare industry say there’s no evidence that cannabis has been shown to be safe and effective, what they mean is not that there are no studies period, what they mean is no large scale clinical trials. And a large scale clinical trial is very expensive. And it’s generally done by someone who’s seeking FDA approval for a pharmaceutical. There are certain cannabis pharmaceuticals out there. And they’ve gone through a number of clinical trials. But again, those are isolates. And people who are doing the whole plant medicine and who are finding really amazing results. They But they don’t have the money to fund large scale clinical trials. And I’m not trying, I’m not trying to make an excuse. I’m trying to explain why that evidence doesn’t exist.”

This episode is rich with information and I personally learned a ton through the process of preparing for and interviewing Ruth and then reading her book. I’ll leave you with a final quote but please take the time to listen to this thorough, fascinating and very personal discussion providing not only information on medical cannabis such as dosing, forms of use, whole plant, but the many factors that have influenced healthcare opposition, recent advances, risks and more.

“The big problem I had is the people..doctors who are closed to it, and who have patients who are afraid to tell them that they’re using cannabis because now you’re missing all the interactions. And now you’re going to have people using it with zero oversight from their doctors, and you’re going to cause all sorts of problems. So, I think the first step is for the doctors to start learning from the patients and just being open to it. I know that my brother had a neurologist, and very early on, he had some really, really bad symptoms. And very early on, he was going through things and he got to the point many times where he’s like, I am willing to try anything to address this problem. And at one point, you know, he got to diet, and he put himself on a very limited diet. And lo and behold, that solved a lot of his problems. And he went to one of his neurologists, his neurologist who’s making different recommendations. And my brother said, Well, you know, I changed my diet, and that has really helped. And the neurologist said, Yeah, you know, I’ve heard that from other patients, but I really know nothing about nutrition, so I can’t really comment on that. And Eddie,eventually that doctor did end up becoming informed on nutrition and actually now incorporates that into his programs.”

Here are Ruth’s links:

Order: https://www.amazon.com/Medical-Cannabis-Primer-Ushering-Marijuana/dp/1885176023
https://www.linkedin.com/in/rfisher/
https://medicalcannabisprimer.com/
https://www.quantaa.com/
https://canndynamics.com/
https://incolor.net/news
https://www.cedfoundation.com/2019/06/07/ruth-fishers-cannabis-primer-book/
https://www.techzone360.com/topics/techzone/articles/2020/01/30/444355-canndynamics-co-founder-educate-engage-cannabis-the-blockchain.htm
https://www.independent.com/2020/01/06/the-medical-cannabis-primer-cuts-through-the-crap/
TSC Talks Guest Ruth D. Fisher

Thank you for listening. All of our podcasts can be found 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/