Join us for part II of this multipart interview series as we go in-depth into the accomplishments and goals of the non-profit, Cannabis Patients Pacific Northwest.
In this interview, Cannabis Patients Pacific Northwest (CPPNW) co-founders, Jeremy Robbins and David Benedicktus, sit down with us for Part II of their educational series where they discuss disability accessibility, cannabis for spinal cord injuries, and how they got into cannabis education.
Catch up on past interviews or watch the whole series!
Read a transcription of the interview below.
Madeline Colli: What have you found to be the biggest misconception with spinal cord injuries?
Jeremy Robbins: I thought this was a really good question and I spent some time last night pondering like, you know, in the general public, I would have to say the biggest misconception is that people with spinal cord injuries want to walk again. I knew when I was laying on the street next to my dog, bleeding, paralyzed that I would never walk again and I've never struggled with that thought. Walking is great. It's a little bit overrated. But, if we can figure out accessibility, you can get around the world just fine in a wheelchair. So that's probably the biggest thing. I would say the second thing and probably more innocuous and complicated is the fact that the medical system has a tendency to think that people that are paralyzed, don't experience pain and this is nonsense. Not only do we experience pain, but we actually experience increased pain because our systems are totally wacky.
And this makes it challenging. You know, I was in the ER about a month ago with a urinary tract infection (UTI) and the doctor’s like, “Are you in pain?” and I'm like, “How can I not be in pain?” You know, I have a fever. My bladder is spasming constantly.
It causes another condition that is really pretty medically fragile. It's called autonomic dysreflexia or autonomic hyperreflexia and so because you know, there's two systems, you have a peripheral nervous system and you have an autonomic nervous system and because my nervous system doesn't work correctly, when there's something that's going on, that's below the level of injury which for me, my neck is the level zone basically anything with my body. It will respond in very kind of strange ways and so dysreflexia starts out, like, I'll feel like pins and needles kind of going up and down my back.
You know, I'll get shivery, I'll have goose pimples which I never really have and I'll start to sweat and I don't normally sweat as it continues to ramp up.
If I don't figure out what the source of it is, it will turn into a blood pressure issue and I've had one really, really bad episode. It was like somebody walked up behind me and hit me in the back of the head with a brick. It blinded me. It deafened me. My body spasmed into like a little raisin and then I spent the next 10 days in the hospital that I'm trying to figure out what was going on. And they never really did. It probably was related to a UTI or a kidney infection or something like that. But it's all it's a little strange.
Trying to diagnose issues as well because again, I can't feel a large part of my body. So, you know, those are those are some of the biggest, biggest things that I deal with, that I think all of us in the community deal with.
As far as like what the world doesn't offer, and that is accessibility, and it just is really challenging for people that are that have mobility impairments, just to navigate spaces to be able to go from point A to point B without, so Portland, Oregon is a great example. Unfortunately, there are a lot of homeless populations. A lot of people that are homeless are on the sidewalks and I unfortunately, people with mobility impairments and wheelchairs they have to use sidewalks to get around. All of these homeless folks are blocking the sidewalks. It literally it took an ADA lawsuit against the city of Portland, which just got settled for them to figure out how to clear the paths so that disabled people going to the store to get their medication don't have to be in the street with traffic in downtown Portland. Yeah, it's dangerous. So anyway, I would say these are the banes of the disabled existence.
They're issues that have existed for a long time and I am sure they will exist for a long time to come. And so, you know, my whole goal is just to kind of work a little bit here and there to make it so that accessibility is a little bit better. You know, in this particular case, I've spent a lot of time trying to make sure that the recreational and medical dispensaries that exist in Oregon, Washington are places and spaces that people with disabilities can get into.
It's been a mixed bag. Portland has a lot of old homes. That was cheap real estate and that's where dispensaries moved it. The ADA is a little more elusive as far as coverage for those sorts of places and so it's been a give and take experience.
Yeah, the best thing that I saw was a friend of mine, he owns the third largest chain of stores. There was a location that he had, where I went one time and like I literally couldn't get anybody to come to help me out.
He just demolished it, tore it down, and built a brand new one that was fully accessible.
Yeah, really, really impressive. I felt like that said a lot about his ethics and the way that his business was going to be. Honestly, that was kind of the blueprint and he's put these little accessible dispensaries in quite a few places. I thought that was really cool.
Yeah, those are I would say those are the big things that we that we experience and deal with.
Change is slow. You got to be patient, but you also have to be persistent. You can't give up and that's my thing is I just I want to be nice, but I also I want to be able to live and experience the world, just like everybody else. So yeah, that's it.
Colli: Are you starting to see a little bit more accessibility for you now. Are you still kind of experiencing those roadblocks?
Robbins: Pleasantly enough, I feel like we are on an upswing with accessibility, with accessibility knowledge, with just trying to level the playing fields, and so it is getting better but like I said, it's a very slow, very slow process and it sucks when you have to as a disabled person, you know the ADA exists supposedly so that these accessible options come about but it really you know, the ADA is like 33 years old and it sucks because what I have to do is I have to then file a suit with the Department of Justice, I have to find an attorney that's willing to take on the case. Not only am I disabled but then I have to get involved in a legal system which I have very limited knowledge about and honestly isn't really catered to the public. It's a very cumbersome system to get the laws changed and ultimately that's what it is, is the laws.
The big thing right now is air travel. Like figuring out how to make air travel better for people particularly with power wheelchairs, the big bulky wheelchairs. What we're seeing is that, plane designers, the people that are building the airplanes, are now building space into the planes where you can just wheel your power chair in and just sit in it for the duration of the flight.
This is radical. I have to get in what they call an aisle chair and you have to drag me halfway down, and people have to help me get over the bulkhead in my seat. It's a lot more work than it needs to be. This is the hope these are the things that we continue to work towards.
The real issue with I think all disabilities is having a voice, having folks that are visible, or are well known that have these conditions that can advocate for it. We don't anymore. We had Christopher Reeves, we had Superman for a while and once he went away, I think we've kind of struggled with an identity crisis.
Research and research money that's always a big deal and there's the focus I think is lessening on, like how to fix spinal cord injuries and it is increasing into how to make things just more accessible. So it's good change.
Colli: David, can you tell us a little bit about your background in nursing and how you became a cannabis educator? I know mentioned a little bit in your story, but maybe you can expand a little bit further.
David Benedicktus: I mentioned my brief experience working in inpatient oncology. Seeing that the system was kind of flirting with the idea, you know, in terms of managing some of the side effects of the chemotherapy and looking at the benefit of cannabis products for that. What really opened it up to me was and I, again, drawing on my experience, working in both direct patient care and clinical settings and then looking at our health care policy and how it is set up to help mental health and chemical dependency patients. So how it really came into focus was in teaching community education classes in the Lifelong Learning Program at Clark College here in Vancouver, Washington. Two of my students, husband and wife, Jay and Helen Elder took the class, my series of classes that I was doing, and they were early retirees. They were in their late 50s and they were saying, “holy crap, we don't have to die like our parents! We don’t have to experience cognitive decline, dementia, we can even reverse a lot of the chronic disease syndromes; we discovered inflammatory process are the cause.” So, I continued teaching at Clark and I hadn't heard from them for about a year, they came back to me and said, “We've organized all the complementary medicine practitioners in southwest Washington. We're creating a nonprofit called Complementary Medicine Practitioners of Southwest Washington and we'd like you to be on the board and help us develop educational programming for the community so people can understand there's prevention, wellness and alternative and complementary care that can help supplement the allopathic medicine approaches, which are legitimate in both acute care, and chronic care settings, and can reduce the amount of pharmaceuticals that people use and use lifestyle modalities instead.”
In fact, Kaiser Permanente has a whole complementary medicine research group. I found out about the research group and I used to go and attend for a couple of years. They had their quarterly meetings over and in Portland and they would talk about the studies being done on complementary medicine approaches like acupuncture, biofeedback, meditation, electric eye movement desensitization (EMDR) therapy. So, I was saying, “Oh, my goodness, they're researching this.” So, we took that and we did outreach talks in the community.
We had the Clark College classes, health care classes that I had about 30 to 55 people attending those. That was great. We made a relationship with the library system, and I would set up to have talks at the library all throughout the Southwest Washington area, on the topics of inflammatory lifestyle, and I said, “You know what, I'm just going to start including cannabis in that because the research is right there.” A lot of people come to these talks and they want to know about how to prevent chronic disease and also to prevent themselves from getting dementia which is a big, that's a big bad Baba Yaga kind of experience that people have about getting dementia, or seeing their parents die from it. So, I started teaching and the library said, “Fine, we're all about education and evidence-based science,” and we began teaching them throughout the library system.
The city of Vancouver said, “we'd like to have you guys come out and do that for our employees because we have a wellness program,” and we said, “we'll do it for free and we'll come out and do that.” For three or four years, we did talks, and I organized just like I did in the classes at Clark College. I did a kind of introductory talk about prevention and wellness, preventing cognitive decline, inflammatory lifestyles. Then we'd have naturopaths and physicians and nurse practitioners come in and give specific talks in certain areas. People are pretty interested about memory and how to how to protect their memory. I'm going to do a class on memory and in the class on memory, I mentioned cannabis and I said to the employees there, “now you can't take cannabis yourselves because you're a city employee, but maybe your relatives who are retired can use this information or when you retire, you might be able to use this information about cannabis and how it’s neuro protective and an anti-inflammatory along with all these other anti-inflammatory lifestyles.” Well at that class there was a retired police officer and he came up to me afterwards he says, “I knew there was something more than just getting high with that.” He then contacted me and invited Jeremy and I to a policy meeting of the retired city of Vancouver police officers and firemen to talk with them about how they can lower their health care prescription cost by educating their retirees about medical cannabis, and that was in like 2018.
We were little Johnny Appleseeds, going to spreading this information everywhere and landed up in that place, which was really very fun to do. So, how I really got into teaching cannabis was by learning that there was evidence-base, there was science on it. Even Sanjay Gupta was one on one of the top talk shows. Can't remember which one he was on, but I saw him on there and he was talking about Charlotte Figi in Colorado and how that was the only thing that helped her with her seven seizures that she had every hour or something like that. She had a pediatric seizures disorder. When I started looking into that, I saw that it was helpful, this was Sanjay Gupta, for this list of things for MS, for cancer symptoms, for irritable bowel syndrome. He's saying that it’s harm reduction in terms of opiate use and sometimes this is the only thing that works for people and it is. He said this and I said “well, I got permission now.” He said it is immoral not to tell people about this. So, when he said that, I said right there, I'll sign up.
Then Jeremy and I started realizing that the five-week, 10-hour class that we teach here at Clark College, about 10-12 students came to each one. People would keep calling us up afterwards or emailing us asking questions and stuff. We started a support group where we met in Jeremy's living room at his house here in Vancouver and we had, you know, five or 6-10 people show up for that and they were talking about growing, different products that they were using. People were concerned of course, because the high prices of cannabis especially in Washington with the excise tax on to it. Patients said, some things worked, some things didn't. Sometimes dispensaries ran out of products that worked and so they were trying to deal with all these issues as a medical cannabis patient. We thought “well, that would be a good thing to be able to offer the people consistent information on taking medical cannabis. We wanted to educate patients and the dispensary owners about what patients need, policy makers, and health care providers, as to what info to provide to patients.”
That then evolved into us finding a space in a cannabidiol (CBD) store here in Vancouver, an American Shaman store that was run by a person who was open to having educational talks. For almost three years we did that. And that gained a lot of energy. We thought well, maybe we should start a nonprofit and pull this together and organize it. On the board we'll have all these people that have been coming in and classes and specialists and talking Jeremy and myself. Carol Stiff, who was the first person in 2017 in the class that told me about all other experts in the area. And then we got Tom Laureman on the board and we got connected with people like Victoria Star who was a pharmacist, and she was getting her secondary degree at the University of Maryland, in cannabis pharmacology. She's not on the board but she was a consultant for us. Then people like Megan Marchetti, who was one of the original founders of NORML in Oregon and ran a dispensary, she managed Oregon's Finest. We had this wealth of knowledge that we could use to educate the public and health care providers about medical cannabis.
We’ve been doing that for about three years now and been teaching classes and writing blogs and a monthly newsletter and things like that. Again, with the purpose of to help people decrease their suffering, right. It's to provide alternatives to the traditional medicine approaches that have limited benefit for chronic diseases as we know. Cannabinoids can be a mono therapy, can replace, in many cases, a lot of the medications, pharmaceutical that patients are taking. There's documentary on Prime Video called “Unprescribed” about veterans I just saw, that was just stunning. We've been giving talks to veteran’s groups for a while. We'll talk about that later, but the fact that veterans can replace 9 to 15 pharmaceutical medications by taking regular doses of different types of cannabis, is just stunning. Sanjay Gupta said it doesn't work for everybody but when it does it’s great, and it’s harm reduction, it saves people's lives. In the words of the veterans’ families in this documentary called “Unprescribed,” highly recommend it, it turned them from zombies into regular human beings. As Jeremy was talking about, all the medications that he was taking that were prescribed, had some benefit during the early part of recovery, eventually turns people into walking side effect factories and they can't think clearly. The personal testimony was just stunning. And then of course, Sue Sisley’s talking about her research. She reports that only two drugs have been approved for post-traumatic stress syndrome (PTSD) and they only have 20% efficacy. So, all that gives us scientific and ethical grounds to go out and do outreach reach, talk with people, teach classes. And people are stunned by the information. They say, well, no one ever told us this.
Colli: Can you share a little bit on how you use cannabis now to treat your symptoms?
Robbins: The big thing that I've been prescribed cannabis for over time is for spasms. For spinal cord injuries, depending on the type of injury that you have, most folks that have what they call an incomplete injury, so that means the spinal vertebrae isn't completely severed, but probably just damaged. They still have some messages that get through. The problem though is that those messages get kind of jumbled up and they don't quite know how to read those messages. What happens in the body is it kind of gets short circuited and it causes muscle spasms, and the spasms can be really debilitating. I experience them in my legs, which aren't too bad. But I experience them in my abdomen and my arms, my forearms in particular. If they are severe, depending on – there's a bunch of different factors that can go into the severity of them, but if they're really bad, I can't move, I can't do anything and so cannabis helps to calm those spasms down. Logically as a result of having muscle spasms all the time, it leads to pain. Cannabis also helps with pain on some level or another. And then, for me sleep is always an issue and so getting enough cannabis in me, so that it calms my body down so that I could sleep is a really big thing.
I used concentrates pretty exclusively for the last seven years and by that, I mean BHO or butane hash oil. I smoked a gram a day I was able to produce it myself. I bought a closed loop system and got training from Skunk Farms in 2013, so a decade ago, a long time ago when it was actually still legal, there were no laws that said they couldn’t do the stuff, I on my back porch, started making cannabis oil. I also learned how to do alcohol extraction on the part of that and so those alcohol extracts are what they call RSO or FECO, full extract cannabis oil. About a half a gram of FECO a night is what really helps to keep my spasms at bay and help me sleep and then during the day I vaporize cannabis.
Up until this last year I was using hash oil or dabs. It's complicated to make them now. I'm not a fan of rosin and so I harvested this last year, I just decided that I was going to smoke flower and so I smoked flower every day. I smoke about four grams of flower every day. So about an ounce a week or four ounces to a quarter pound of flower a month.
I would say that this is really like it's taken me a while to kind of figure out this protocol and really like what works. There are some specific terpenes that I look for in the flowers that I either produce for myself or I procure, and the biggest one is humulene. Humulene is related to hops and that really just helps to calm things down, particularly the spasms, and so that's really what I focus on doing, either finding cultivars that have that or growing cultivars that have that.
Cannabis works really well for most people with spinal cord injuries. I would say probably like 95% of the people that are paralyzed and have spinal cord injuries. When they use cannabis in one form or another, really experience the benefits from that. Because we live on the West Coast and there's so many novel forms of consumption that you can access, it's really great. I really like transdermal patches and I would use transdermal patches every day if I could find them wholesale or cheap enough to make it worthwhile. I think most patients would do that as well. Especially being paralyzed you can just put one of these things on and basically forget about it. You're not having to smoke something. That's also a real challenge for people that have high levels of injuries, like they literally can't light a lighter, they literally can't pack a bowl and so the alternatives for them were pretty bleak for a while again, technology has caught up. There are these awesome things that are called disposable vape pens, and you literally just suck on it and you get that cannabis oil and it helps tremendously. I use a vape pen at night and whenever I'm traveling or something like that. I've used all sorts of products, I've used pretty much everything with the exception of suppositories and the reason for that is because they give people with spinal cord injury suppositories to go to the bathroom, and so it wouldn't make a lot of sense if I was using that as just to get medical relief. However, I have at least three friends that I know of that use suppositories on a regular basis, cannabis suppositories, and I have consulted on how to make it for them. It's a big world of cannabis out there and so what I encourage people to do is to slowly but surely figure out what works for them. What last the longest, of course, are edible and/or oral products like FECO, but what is most convenient and what works the fastest are vaporized products like dabs and flower and vape pens. So that's it. That's what we use all day every day.