This interview appeared in the December 2023 Cannabis Science and Technology Journal
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: 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.
https://www.cannabissciencetech.com/view/empowerment-through-education-it-s-not-food-science-it-s-cannabis-science-
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