After years of prohibition, the therapeutic use of Cannabis is becoming more and more accepted in mainstream culture. In the US, 33 states and the District of Columbia have laws allowing the sale of marijuana for medical use. Several of these states have also legalized its sale for recreational use without a doctor’s prescription. Even in places where marijuana is still illegal, products containing the non-intoxicating compound CBD – which can also be derived from hemp – are often found, advertised to treat a variety of conditions

Even as more and more people have access to cannabis for therapeutic use, the scientific evidence of its benefit is lacking. The FDA still classifies marijuana as a Schedule I drug – meaning that it has no accepted medical use and a high potential for abuse. It remains illegal for any use at the federal level. A handful of studies have looked at cannabis, as well as THC, the main psychoactive compound in cannabis, and CBD’s effects on amyotrophic lateral sclerosis (ALS) and reported promising results. However, there is currently is no conclusive evidence for its efficacy or safety, and certainly no approved treatments involving the plant or any of its active compounds.

Because of this, we at the ALS Therapy Development Institute (ALS TDI) cannot endorse or recommend the use of cannabis in any form for use in treating ALS symptoms. Still, we know from out conversations with members of the ALS community that a number of people living with ALS use these products and – strictly anecdotally – report experiencing some relief with them.

In the interest of informing our community – and providing the best answer we can to a question we hear frequently – we’ve spoken with some people with ALS in our community who use cannabis products. Angelina Fanous lives Cleveland, Ohio, and was diagnosed with ALS in 2014 at the age of 29. Steve Saling is a resident of the ALS Residence at the Chelsea Jewish Nursing Home in Massachusetts. He was diagnosed with ALS in 2006 at the age of 38. Both graciously agreed to share their experience and advice about cannabis with us.

Do you personally use cannabis to treat your symptoms? If so, how do you take it/what kinds of products do you use?

Angelina Fanous: Yes, I love all things cannabis. I view it as one of my medications, no different from any of my doctor-prescribed pills. I medicate with it in all forms: I smoke the flower in the morning and at night as a cough-inducing therapy to extract any excess saliva from my lungs. It's much more enjoyable than using those awful cough-assist machines, because the psychoactive effects increase as you cough. I ingest oil and other edibles to medicate. I rub topical lotions and ointments into my sore muscles, and I apply adhesive patches to my skin for an all-day, constant slow release of medicine. I medicate with so many methods because each delivery system offers its own unique way of offering relief. Even though it's the exact same drug, your body metabolizes it differently depending on how you consume it, and that has a real effect on how you ultimately feel.

Steve Saling: I use cannabis primarily to relieve the cramping and stiffness associated with my spasticity. For a long time, my preferred way to administer the medication was to vaporize the dried flower. I switched to the vape pen about 2 or 3 years ago because it is incredibly convenient but I am beginning to question whether the cannabis oil is as safe to vaporize as the flower and may go back. I also use the flower to make a tincture that I can put through my feeding tube which is a very convenient way to medicate. Finally, I use a cannabis infused lotion for skin care and a muscle rub.

Do you use CBD? How about THC?

AF: I use a formula of a CBD :THC : THCa, as a 1:1:1 ratio. Unfortunately, I don't know of any products that sell this together, so I buy each cannabinol individually and I combine them on my own. For example, I buy THCa patches and 1:1 CBD : THC patches separately and wear them together. Same goes with oil. If I can't find THCa, then I change my formula to 8:1 CBD : THC, for daytime and a 1:1 ratio for nighttime or more laid back activities. For extreme pain, like when I'm menstruating, I use CBN with the rest of the cannabinols, but especially with THC it's a very potent muscle relaxer, because they amplify each other's effects. The cannabinols are stronger together than they are on their own, and they behave differently when they're together as well. for example, CBD reverses the psychoactive effects of THC, so the more CBD you consume, the less high you'll get. This is also a great way to start dabbling in cannabis, so you're not totally overwhelmed with the feeling of being stoned.

SS: I prefer the THC over the CBD because I enjoy the high. I cannot comment on the CBD other than saying I am glad that it is safe for children. I do not recommend THC for children under 18.

How do you find them helpful?

AF: Generally, I use the CBD : THC : THCa, as 1:1:1, and this gives me energy and endurance throughout the day. THC alone will be prohibitive on the motor nerves ¬– I mean, they call it getting stoned for a reason, your body turns into stone. But by combining THC with other cannabinols, it renders the opposite effect. This is, of course, a theory I developed and I am not sure if other patients will have the same results or reactions, but even if it provides nothing else, it's a great muscle relaxer and mood booster, so you'll be comfortably content all day. If I'm in pain, I increase the THC and I add CBN.

SS: The main benefit I get from cannabis is that it will almost instantly relax muscles in my body. I experience a lot of spasticity, especially my legs. I frequently experience severe cramping in my legs while I sleep. A little bit of tincture before bed and I sleep like a baby.

Where have you found information about what products to use/dosage information/etc?

AF: I've collected information about cannabis, the different cannabinols and how they behave, over the past seven year. Shortly after I was diagnosed with ALS, I flew out to Colorado (I was living in NYC at the time) to meet with industry professionals and gather as much information as possible. I tried different products, learned about CBD for the first time, and experienced firsthand how cannabis alleviated my aches from the cold weather. I found the trip more informative than anything I experienced at a doctor's office that I moved to LA a couple of months later. It's been a constant research endeavor since.

SS: Cannabis is a very safe medicine. There is no fatal dosage. However, there is a lot of variability with cannabis so there is always a little bit of trial and error to find the appropriate dose. People should also know that cannabis inhaled into the lungs is effective almost immediately and will remain effective for a couple of hours. Aside from getting super stoned and passing out, it is impossible to overdose on smoked or vaped cannabis. This is in stark contrast to edible cannabis which is very easy to overdose on. Eating or drinking cannabis can take anywhere from one to several hours to take effect and that effect is much more intense and easily last 6-8 hours. With edibles, it is important to start low and go slow. An overdose on edibles may not kill you medically but it can and has caused suicidal behavior.

Do you have any advice for other people living with ALS that are interested in using cannabis to treat their symptoms?

AF: I get a lot of messages saying how someone ate an edible or smoked a joint, and it made everything worse and they couldn't tolerate it, and I always advise them to at least ingest some CBD oil or sprinkle some CBD flower in your joint. THC alone will have a prohibitive effect on your motor functions, and that is not fun for anyone already having trouble moving.

SS: If you are trying cannabis for the first time, I would say to keep an open mind. I think tincture is the easiest product to dose. After a little trial and error, you can dial the dose to get maximum relief while minimizing any negative side effect that you may perceive. Happy 420!

Please note that the views expressed in this piece do not represent the official opinion of the ALS Therapy Development Institute and should not be taken as medical advice. If you are interested in exploring the use of cannabis for ALS symptoms, please talk to your doctor and consult your sate and local laws.