If you inquire with a medical specialist regarding dystonia, you’ll learn that it’s a family of neurological disorders similar to Parkinson’s Disease, only more severe. Due to its relative rarity, the average layperson has never heard of dystonia. Severely degenerative in nature, it is actually—behind Parkinson’s—the third most common movement disorder, afflicting more than 300,000 people in North America.
Dystonia disturbs nerve signals from the basal ganglia in the brain to various muscles. Some dystonias are genetic, while others are the side effects of pharmaceutical drugs. Brain injuries are a third causal classification.
The Dystonia Medical Research Foundation defines this ailment as “a syndrome of sustained muscle contractions, frequently causing twisting and repetitive movements or abnormal postures.”
But ask British Columbian and dystonia sufferer Dennis Lillico for a definition (whose dystonia is genetic in nature) and he’ll convey to you a very personal story of pain, depression, incredible optimism, and overwhelming challenge.
“I suffer from severe depression and involuntary movements in my body that are stress induced,” Lillico said during an August phone interview from his home in Trail, B.C., about 140 miles north of Spokane, Washington. “It causes my brain to have an auto dominant nature. That means I look at things with an analytical mind.”
While most sufferers of severely debilitating diseases would rather indulge in forgetting their symptoms, Lillico has accumulated a knowledge of his condition that approaches that held by most doctors. “I have seven high signal legions within the frontal lobe on the right side of my brain,” he said. “My condition is classified as essential myoclonus, which means that it is degenerative, based on myelin deterioration.”
Lillico described his condition in a manner more seeming of a medical professional than a man who can label a weekly two block walk to a public park a major victory. Unlike a medical professional of the western variety, however, he is particularly good at describing the human side of his ailment.
“The perception of time doesn’t mean much to me,” he said matter of factly. “Dates are not very important to me either. I have to look at things differently.”
Extreme Sensitivity to Stress
Lillico’s daily existence hinges on his ability to prevent or reduce stress. He suffers from continual involuntary movements throughout his body, severe depression, and extreme sensitivity to stress. He is also afflicted with Obsessive Compulsive Disorder. Based on MRI scans of his brain, doctors believe—but cannot conclude—that he may also suffer from multiple sclerosis.
Lillico only wishes he could define stress by the same metric as the rest of the world. Workplace politics, rush hour traffic, and misbehaving children are stress sources of which he can only fantasize. His personal stressors—activities such as walking, talking, eating, and personal grooming—are things that healthy people take for granted. Tasks that others perform several times per day, almost as afterthoughts or background activities, are monumental challenges for this humble Canadian.
“I find amazing that, by listening to the children who are playing in the pool, laughing, having fun…it helps me connect my heart with my brain,” he explained. “There are lots of things that you can do for stress reduction. And hanging around kids playing in the pool is some of the best stress reduction that I can do.”
The compassionate tone in Lillico’s voice dispels the notion that he may be living vicariously through the energetic, carefree children. He has seemingly accomplished the rare feat of channeling his pain and suffering into a compassion for his fellow humans.
Lillico’s voice and his enunciation are as I envision Dr. Stephen Hawking if he were capable of speech. It’s easy to gain the perception that Lillico might literally be a sub-genius, his condition being so severe that it would drive those of a lesser intellect or mental tolerance into psychosis, severe chronic depression, and even suicide.
Simple Tasks Difficult or Impossible
Lillico described in painful yet objective detail an incident when a friend prepared pancakes for him. “I couldn’t put my hand to the plate. It was a hard struggle, very hard,” he said. He described how it was impossible for him to cut the pancake, place it in his mouth, chew, and swallow, because his disorder affects every muscle in his body.
“Just the simple movement of me taking a fork and trying to put it to a plate…I couldn’t physically do that without fighting very hard,” he said.
After witnessing Lillico’s struggle, his friend began to weep. Without the ability to chew or swallow, however, there was little his friend could do to assist.
“Without any hesitation, after smoking a doobie, I wolfed the whole pancake down with no problems whatsoever. At that specific point in my life, there was no one on this planet that was going to tell me that I couldn’t smoke my medication. No one.”
In only six years, Lillico has endured a lifetime of suffering. Many simple pleasures in which people indulge on a daily basis will never be enjoyed by this soft spoken 40-year-old. A brief phone conversation taxes his energy and can be a monumental challenge.
A man of above-average intelligence, Lillico’s brain produces thoughts that his mouth and tongue muscles have difficulty expressing (similar to stroke sufferers). The stuttered lethargy of his speaking can easily tax an impatient conversational partner. The knowledge that his stilted speech can be frustrating to his conversation partners, in turn, further stresses him—thus deteriorating his speaking ability to an ever greater extent.
Simply by attempting to engage in a common activity (such as eating or walking), Lillico can, ironically, cause himself enough stress to prevent his ability to engage in the activity. His life is a physical metaphor for an emotionally crushing Catch 22: Engaging in activities that potentially reduce his stress level threatens to cause him stress.
Familial Autosomal Dominant Myochronic Dystonia
Officially labeled Familial Autosomal Dominant Myochronic Dystonia, Lillico’s condition began to manifest itself in pain and muscle spasms in 1999. But it was not until 2003 that neurological specialists in Vancouver were able to accurately diagnose his disease.
To Lillico, the exact label on his ailment is of little consequence. Regardless of its Latin name, pain and struggle are pain and struggle. The perpetual lack of control he exhibits over the muscles in his body needs no medical title. It is a constant reminder of his minute-to-minute challenge to fight his disease and overcome the lure of depression and hopelessness.
“Leading neurologists and experts on my condition have told me, in writing, that there is very little that can be done about this disability because it is a genetic mutation,” Lillico told me.
Leading Edge Desperation
Dennis Lillico is a man literally ahead of his time. Unlike those with more common and more treatable conditions such as epilepsy, Crohn’s disease, or Hepatitis C—where at least some form of credible medical treatment and understanding of their illness exists—Lillico finds his condition to be on the cutting edge of medical ignorance. Hopelessness can easily spring forth from responses from the medical establishment such as “We simply don’t know.”
“Most people who have had my disability before have committed suicide because they can’t take it…and I can imagine why,” he said, his already-weak voice crackling with emotion. “So it was no question for me to legally take on whoever I had to take on after realizing exactly what benefits cannabis was giving me,” he said.
Pharmaceutical Treatments Not Effective
It is soon obvious that Lillico perceives the responsibility to research and treat his disease to be his own.
“There are such things as botox treatments, injections into the muscles that can relax them, that have been found beneficial with disabilities such as dystonia and other neurological conditions,” Lillico said objectively. “But, because all of my muscles move, [doctors] are afraid to inject botox because I will just go limp and won’t be able to move at all.”
Lillico described how many neurological conditions run parallel to autosomal dominant features such as his own. “I have been tested and told by Vancouver General Hospital—through a formal neurological psychiatric evaluation—that I use an extremely large portion of my left brain hemisphere, which would make sense if the right hemisphere isn’t working properly,” he explained.
Despite the severity of his condition, Lillico is a testament to the human body’s ability to reprogram itself to adapt to adverse conditions, such as the myelin deterioration suffered by his nerves and brain. “They told me I use approximately 94% of the left [brain] hemisphere and 6% of the right hemisphere. So I use a lot of the ‘put it together’ side of the brain,” he said.
90:1 Efficacy Improvement with Cannabis
“[My doctors] have documented in their records that even the best medical drugs out there, the newest drugs out there, are only working for 1% of this disability,” said Lillico. “Whereas cannabis helps me with 90%. So I just told them, ‘You know what, guys [laughing], you think I’m going to sit here and go through this when I don’t have to?! No way!”
Lillico acts as the “cannabis is good medicine” poster child for every doctor he meets. “I have changed every doctor’s opinion I have come across about medical cannabis,” he said proudly. “They have acknowledged, in all of their reports, that it is beneficial to me.”
When asked his opinion of cannabis and its efficacy for his ailments, Lillico couched his response philosophically. “It is a fight for quality of life for me. If I don’t have cannabis or any cannabinoids in my body, I wake up and I’m in pain from the neurological damage that’s being done to my system,” he said.
Using cannabis to manage his pain and movements, Lillico smokes (or uses a vaporizer that a neighbor donated) throughout the day. He can quickly fall into a downward spiral if he is without cannabis. His pain causes stress, which in turn causes more painful myochronic movements within his muscles. “If I’m not able to shut down that vicious cycle, I will live a very debilitating life,” he said soberly.
Lillico’s affinity for cannabis is understandable, given that the best medical treatments available have almost zero efficacy for his condition. “I have noticed that, when using cannabis, I am able to do things with a smile and totally relax every muscle in my body. Using stress reduction tools, such as meditation and proper breathing, I am able to confront a lot of my movements and reduce stress as much as I can,” he said.
Without cannabis, Lillico often cannot walk. If he can’t walk, he can’t transport himself to soothing environments, such as parks and pools where children play. If he can’t achieve the simple task of walking to a park, he also can’t enjoy the benefits of self-reliance and stress reduction.
Lillico is adamant about his choice of cannabis for treatment (although he has little choice given the lack of efficacy from pharmaceutical treatments). “I can choose to be up and energetic. I can choose to put one foot in front of the other. I can choose to have a smile instead of frowning,” he said. “Those are choices made available to me only by cannabis.”
“I do believe, in my specific position, with what modern science has to offer me, that cannabis is the best medication possible for my condition,” he concluded.
More Than Cannabis
While he readily admits “Cannabis is the only medicine that has given me any relief,” Lillico freely acknowledges that his condition is treated by more than cannabis. But he just as readily says that, without it, he is incapable of indulging in his other stress-reducing activities. Cannabis makes his other treatments possible.
“The Heart Mass Institute in California has taught me how to breathe properly,” he said. “By breathing and thinking something good—and, of course, using cannabis as well—I am able to reach deeper states of meditation, which is healing me and giving me the strength to put one foot in front of another,” he said with a tone of victory.
“Sometimes, that’s a real challenge for me,” he added.
Does he feel cursed by his disease? Lillico is quick to offer a more optimistic course of thought. “Oh, no, I feel blessed! I feel like I’m the luckiest person on this planet right, now…I do. Because I’ve been given an opportunity to try to help people,” he said emotionally.
Of course, due to the relentless efforts of a monopolistic pharmaceutical industry and prohibitionist politicians bent on fear mongering, most of the world doesn’t understand the efficacy Lillico gains from cannabis. “Even one of my closest friends doesn’t believe in medical cannabis that much,” he said.
“I acknowledge the international efforts to destroy the medical benefits of cannabis in the United States. I have very strong opinions about that,” he added, hinting at his activist side.
“Cannabis benefits every neurological condition except for Parkinson’s,” Lillico told me. “Health Canada has even acknowledged that there is benefit and, in every case, they have stated that there must be more research done. They have reported 54% to as much as 94% symptom relief in every neurological condition out there,” he said.
Lillico can’t afford to purchase cannabis on the black market based on his meager income (unable to work, he receives public assistance). He relies on the charity of others who contribute medicine. “Some people have, through the internet, helped. But a lot of the local people think that I’m too outspoken and are afraid to help me.” At the time of this interview, Lillico was out of cannabis.
Lillico has attempted to grow his own cannabis, but with little success. Prior to obtaining a medical exemption and grow license, Lillico’s small grow effort was confiscated by the police.
“The RCMP came in February of 2005 and took out my grow room and two pounds of dry medication that I had locked up in my room,” he lamented. “They went in and they destroyed half of my grow equipment and shut down the power to my house. They put me out of my house for two months.”
There are many who believe medical marijuana is a farce, due in large part to governments that continue to propagate this notion. But to patients such as Dennis Lillico, the efficacy of cannabis is more real than healthy individuals will ever comprehend.
Patients such as Lillico, who often search for years or even decades for a credible solution to their pain and suffering, are perplexed by the inability of their own government and the medical establishment to recognize such a simple and natural source of relief as cannabis. Couched in politics, corporate monopolies, and a government insensitive to peer-reviewed scientific research, current marijuana policy is clearly not meeting the needs of people like Lillico, arguably society’s most vulnerable citizens.
 Healthy nerves in the human body are coated with a myelin sheath. This protective tubular casing consisting of specialized fat cells that protect nerves from electrical activity and allow them to function properly. It is the myelin sheath that contributes the color to the white matter of the brain.
[This article originally appeared in Cannabis Health Journal in October 2005.]
All text and photos, unless otherwise noted, Copyright © 2003-2018 Gooey Rabinski. All Rights Reserved.
Gooey Rabinski is a technical writer, photographer, and compliance documentation specialist for cannabis businesses who has contributed feature articles to magazines and media outlets such as High Times, CannaBiz Journal, MERRY JANE, Emerald Magazine, Grow Magazine, Herb.co, The Kind, Skunk, Cannabis Culture, Whaxy, Heads, Weed World, Green Flower Media, Cannabis Health Journal, Green Thumb, and Treating Yourself.
He is the author of Understanding Medical Marijuana, available on Amazon Kindle.