Julie Falco lives in Chicago. She was diagnosed with Multiple Sclerosis years ago. Now she eats brownies with cannabis baked in to help slow her disease progression and alleviate pain and discomfort among other things…

Q: Tell me about yourself.

I am 39 years old and I have had MS (Multiple Sclerosis) for 18 years. It was about 1996 when I stopped working. I was working at MCI and they wanted to do a move to another state and I didn’t want to go anywhere. I opted to take odd jobs here, but my disease progressed from there. I was walking with one cane and then picked up another one. Shortly after that I got a four wheel walker and shortly after that I got a wheelchair for long trips. I call myself a Jane Bond of Assisted Devices.

So yeah, I use the walker in the apartment typically and when I go out I drive my car and use the wheelchair. All that to say, I have kind of attacked that and how to make myself independent trying to get all these devices, it is kind of a parallel to the medications where I have tried all kinds of stuff to manage different symptoms over the years. It started out with mainly pharmaceuticals- Tylenol 3 with Codeine, Valium, Zanaflex for leg spasticity, Flexerol, anti-depressants. The majority of things I took would create awful side effects and cause other problems. I still take the Tylenol 3 with an injection I take to slow the progression of the disease. I take them every four days. They start you off and say you should take them every other day. But the side effects- waking up with massive headaches and flu-like symptoms, I hit a brick wall.

So I talked to my doctor, we tried every three days, and it was still too much. My body couldn’t recover fast enough. So we worked out every four days. They say flu-like symptoms should subside after six months, but that’s not the case. I have been on the injection drug for 8 or 9 years now. The majority of the days after I feel headachey and weaker. When I take the Tylenol-3’s to offset the pain and achy-ness, it helps, but creates a constipating issue.

I smoked, you know, cannabis in college, it was just you know, college, parties, smoking, whatever. When I had the MS I tried it again just to see if it would be another option. Inhaling, there was a calming effect, it would help with insomnia, so I could get some sleep. Other than that, nothing really significant other than relaxing. Until I met up with Brian. After reading Brenda’s story I thought, ok, I need to get involved because she has MS and Glaucoma and she had been arrested and has been through a big mess. I got on the email and said I want to get involved, it just seems too big not to.

I met with Brian a few times and he provided me with brownies and I started taking those regularly. I noticed a huge difference than inhaling for me. Now this has been going on for a year now maybe? Consistently, I would notice significant changes with, well, the effect felt like, when ingesting the effect that I would get felt almost identical to Tylenol 3 with Codeine, but a longer duration because I noticed I was increasing my dosages with the Tylenol 3 which led to more constipation. But ingesting more brownie, I could wean myself off of the Tylenol 3’s without the constipation effect.

The major difference I noticed, it was not a regular time or anything like that, but I tried to consistently take some everyday and at some point typically during the day, something would click, and usually when I walk with my walker, if I don’t have anything in my system, my legs spasm and stiffen up- like when you are stretching when you get out of bed- but my body does that automatically a lot during the day.

With the walker, when I walk, I drag my toes on the ground and they are flexed like that. If I take a step, it’s like my feet are dragging on the floor. When I have the cannabis in my system, there’s something that happens that I notice- my legs don’t spasm as much, there’s less spasticity, and I am picking up my feet enough so my toes don’t drag along the floor.

My mother was here one time and couldn’t believe it. She witnessed it and she said, “Oh my God, I can’t believe this, you are picking up your feet,” it’s not like thinking you are drug induced, and I thought, oh yeah, I can pick up my feet.

It’s like I am lucid, but able to do that. The last discussion I had with Brian, we discussed this and I told him, it feels as if whatever reaction is happening inside of my body, because of the MS, your myelin sheath is damaged. Basically, there’s plaques and damage, and they think it is auto-immune- something is attacking itself in my body.

If you think of an electrical cord that is like the myelin sheath- your nerves in your system. Say you have a frayed electrical cord, that it is exposed, the wiring is exposed. Basically, that’s what’s in my spinal column and my brain stem, now there’s probably just scar tissue where there’s these gaps surrounding the nerves. So when I think, ok, “feet walk,” the messages have to stop and jump over the gap in order to fluidly walk. It seems, it’s almost like when cannabis is in my system, it almost slows that signal down so that when it gets to that damaged area it more fluidly crosses over that scar tissue, that damaged area. So I can still walk, but I can pick up my feet, it is like it is slowing down that brain response. Reading this stuff and living with it for years, it seems like that is what is happening. There is something that is definitely benefiting me.

It also helps with my bladder frequency- like when I have an urgency to get to the bathroom right now to pee, but then there’s nothing. It has calmed that down I have noticed.

Also, the spasticity in my legs and my feet… When it is hot and humid, my feet get swollen. I’ve noticed when my feet get swollen, there are days when they feel like tight balloons that someone is doing an Indian burn to- pulling the skin really hard and like someone took a pin and popped my swollen feet. The pain is really painful. I asked my neurologist, is there anything I can do for my swollen feet? And he said to keep them elevated and to try to rotate my ankles, squeeze my toes, move my feet. But I found without marijuana, I really couldn’t, they hardly moved.

It was just a couple of days ago that I noticed when I try to do that when I lie down now, I can rotate them more, and squeeze my toes more on both feet. It felt like it was more. The biggest difference was that it wasn’t as painful as before. So it quieted down the pain I had been experiencing.

I have been notating a lot of these changes. I actually just last night finally weaned myself off of Zanaflex, which I had been taking for spasticity in my legs. I am trying to have one less drug that I have to take that creates other problems.

“My mother was here one time and couldn’t believe it. She witnessed it…”

Q: So at this point, you are trying to wean yourself off other medications?

 Right. To try to weigh against, is this helping… If I have a little bit of cannabis everyday, through these brownies, it consistently holds these symptoms, these side effects at bay. It manages the pain and the things that I feel daily by taking cannabis instead of this for that and this for that and this causes this…

They gave me Valium 2, another muscle relaxer, but that causes depression if you take it regularly. People with MS, they don’t need something more to be depressed about!

Q: Does the marijuana lead to depression?

That has not been an issue. I have not noticed that whatsoever. Particularly with ingesting it.

I am a very strong willed person. Inhaling and having too much was over the top. I would think too much, not paranoid, but lot’s of negative thoughts, feeling like I over-did it. That’s what hit me, all of these other things. I felt like I didn’t have any control. But with ingesting, I don’t do that.

I don’t feel that I am in an altered state. I just feel like I am in an extended Tylenol 3 calmness. That is what it really feels like. So no, I have not noticed any depression at all. Before my accident, I was very positive and was pretty pleased with how it was going. There was one batch of brownies Brian brought over and I said they weren’t working like before and he told me it was a different source, that what he was putting in was a different kind.

So he went back to the original kind, and I said, “Yep, that’s the stuff.” I think it’s from Mexico.

Q: Have you had problems with short term memory loss or any other side effect from marijuana?

I might say that is the only thing I’ve noticed. But it doesn’t last long. I usually remember stuff. I don’t know if that is the effect of my MS or if I can attribute it directly to marijuana use. But yeah, I feel completely different. Some days can be very productive on it. I have tried to think, is there any real downside to taking this? I really haven’t come up with anything. Not to the extreme that other stuff has. I mean, heart palpitations, toes curling, slow heart rate, awful nightmares of killing people. I had dreams of cutting peoples heads off on one medication… So no, I have never really noticed anything so far that has been detrimental.

Q: Have you had memory loss? How has that compared to the effects of other prescriptions?

I don’t take the Tylenol 3 as often now as I used to. I don’t take it everyday. If I did, I’d be up to popping four at a time by now because my system would be so used to it. But with cannabis, it helps keep the pain away longer, I don’t have to keep popping codeines.

Q: Do you eat the same amount of brownie everyday?

Yes. Typically every day I take the same amount. I’ll take pretty close to the same amount and yeah, I’ve played around with it. Sometimes I have taken too big a bite and I’ll sleep it off. But if I just have enough and keep that going through the day- some days I notice the effects within half an hour, but usually half an hour to an hour it’ll kick in. After I feel it kick in, half an hour later, while it is riding, I will take another small dosage, and do that a couple times a day to keep a calm sheen going through all the pain.

Usually, if I am just sitting and I don’t have anything in my system, there’s a constant tingling sensation. Especially my left hand, and always my feet because my legs are most affected. That’s constant all the time, so to have that taken away for a while by titrating my dosage, it’s just a nice feeling- wow, I don’t have that pain, that constant irritating gnawing at my nervous system.

The other thing that happens, if I go out with friends for a birthday or something, and there are lots of people around, I start to get cognitive issues. There is damage with the nerves and with people talking, and the music, and the dishes rattling, and people walking by me quick, I just lose control. My nerves start to short circuit basically. They can’t process the messages quick enough over my damaged nerves.

But I attended some birthdays recently and I was able to sit in a loud, noisy restaurant and talk. For years I had been avoiding situations like that for years. This was a test, in April and then in June, I went out and did this, and again I would have Tylenol 3’s with me in case I got stressed so I could get that feeling of calmness.

But using cannabis during the day beforehand, I was already ready to go when I got there. It just put a calm top on it- it was like, okay, my nerves are okay with this, they’re doing fine, they can handle it.

Certainly, when I got home, I was exhausted, I was just wiped out, because it was a huge process. But at least I could function and go out in society and spend time with family and friends. Where over the years I had just been letting that go- “No, that’s too many people,” or “No, there’d be too many people there…” or whatever. I would have to weigh it against crowd situation, the noise situation, because I knew how it would affect me. Now though, I don’t have that problem as long as I am consistent in my dosing. That’s another thing that can be controlled.

Q: So you didn’t need to take the Tylenol 3?

No, I didn’t need to. I had a brownie beforehand and it carried me throughout the evening. I didn’t touch the Tylenol 3 all night.

Q: Critics would argue that you are just getting high, that you are just making this up. Are you getting high? How does this compare to recreational use?

When I hear that I just kind of laugh. When I ingest brownies, I don’t feel like I am getting high like I used to in college. When I was in college I would get high, we would get stoned. We would party- you know, just that mentality. But now, this is completely different. It doesn’t feel like I am getting high.

Tylenol 3, I took before for managing the symptoms of injecting, and so if you are going to say I am high on Tylenol 3 with codeine, ok, we can say that, but I consider Tylenol 3 as a maintenance drug to eliminate symptoms I was having. Cannabis now is managing my symptoms, I am not getting high, it’s how I handle my disease and it covers a lot of ground. Instead of helping one little thing, it helps a few. It is a completely different purpose. It’s not that goofy stuff.

I’ve been doing this for 18 years, 10 years very seriously- listening to how my body works and reacts with different medications. Taking pharmaceuticals at first was a good test case to tell how sensitive I am to certain things. By using the brownies, it’s a big difference. I know what works and what doesn’t, and this is working really nicely.

Q: How many of your friends have come over now for brownies? Is this a problem?

No! No, not at all. Nobody has once asked me for anything. They understand what I am doing and why I am doing it. They see the difference.

Q: How have you gone public?

I haven’t had anything out there yet. I was working with Brian on a piece he was writing for the Chicago Tribune. I was interviewed for a videotape testimony for the upcoming hearing on October 4 th. In that time, I found out my neurologist supports medical marijuana. I hadn’t brought it up and it was good to know he was on board with it. It’s good to know he’s backing this, too.

Q: So he is backing the proposed legislation?

Yes, there are actually 900 doctors in Chicago or Illinois who support medicinal marijuana.

“I am… being responsible. This is not kid stuff.”

Q: Explain how you were diagnosed with MS

I was in college and the first symptoms that I had noticed, I got home for spring break actually. I was at my parents house and I was hanging out with friends, on the couch, watching TV and my mother asked me to go to the store. I distinctly remember when I got out of the car and I was walking to the front door of the store, I was dragging my left foot. And I kind of shook it off, figured it was because I was just laying on the couch all week.

I went to see a chiropractor that my family knew and he did a bunch of tests on me. I thought maybe I had pinched a nerve or something, whacked something out of place.

I was still showing weakness, dragging that foot, but I had to go back to school. At the time I was in the band and we had a gig prior to school starting up and in the middle of a set, my whole left side started freezing up. My left leg was stiff and my arm was folded in front of me and locked there. The nerves, I just couldn’t move. Everything was frozen up, my whole left side.

They had to carry me to the car and they took me right to the hospital. They did lots of tests there and they couldn’t figure out what it was. I was in small-town Illinois and I decided to go up to Rush in Chicago. I basically slept two weeks solid because they couldn’t get me in for testing or anything. By the time I got to Rush the symptoms were gone. They said they thought it was MS, but they weren’t sure.

So I had nothing, no symptoms for two years. I graduated and was working in a printing shop and I was looking around one day and there was something wrong with my vision. I couldn’t focus on anything. I would get dizzy and have double vision, so I went home again. The right side of my face got completely frozen. I went to see other doctors because it seemed unrelated. Eventually I went to Rush and they did a CT scan and visual testing and confirmed it was MS. They said there was nothing I could do and to just go home and take it easy.

I went it alone for a long time. There weren’t many MS groups back then.

I was still working though. I didn’t start using a cane for a long time. It was just always kind of annoying, like I had permanently stubbed my toe. I was limping but not using a cane yet, so everyone just thought I was drunk.

Some days I would get out of bed and just be really weak. I would have exacerbations in the early 1990’s once or twice a year. Once I got on the Betaseron interferon injection it was supposed to slow the progression of the disease.

The last exacerbation was two years ago now.

Q: Do you have a message for John Ashcroft?

Oh, it’s just so silly. What has anybody got to lose? This is a natural thing that should be looked into. My mother, she knows I am using this and has been here to witness what it has done and to help me. There is something here that needs to be looked at and investigated, to see the benefits that it is giving people.

The MS Society is still completely adamant about even mentioning it. The MS Society will talk about all the other quirky stuff people do, bee sting therapy and vitamin stuff, all these whacky things that people have tried.

I know there are more people like me doing this, who don’t want to talk about it. We have enough problems as is, trying to manage a disease that no one knows how it’s caused or if there’s a cure. So how can you deny anyone in that situation anything that will help them? That’s what I don’t understand, something that is pretty harmless. It is in adult hands. I am doing the titrating and being responsible, this is not kid stuff.