Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is a fatal neurodegenerative disorder that is characterized by the selective loss of motor neurons in the spinal cord, brain stem, and motor cortex. An estimated 30,000 Americans are living with ALS, which often arises spontaneously and afflicts otherwise healthy adults. More than half of ALS patients die within 2.5 years following the onset of symptoms.
At present, there is an absence of clinical trials investigating the use of cannabinoids as a disease-modifying therapy for ALS. However, preclinical models indicate that cannabinoids may hold the potential to delay ALS progression, lending support to anecdotal reports by some patients that cannabinoids may be efficacious in moderating the disease’s development and in alleviating certain ALS-related symptoms such as pain, appetite loss, spasticity, depression and drooling.
For example, investigators at the California Pacific Medical Center in San Francisco reported in the journal Amyotrophic Lateral Sclerosis & Other Motor Neuron Disorders that the administration of THC both before and after the onset of ALS symptoms staved disease progression and prolonged survival in animals compared to untreated controls. University of Arkansas researchers reported that the administration of the cannabinoid agonist AM-1241 more than doubled survival rates compared to controls. “[T]he magnitude of effect produced by AM-1241 initiated at symptom onset rivals the best yet reported for any pharmaceutical agent, even those given pre-symptomatically,” authors concluded. A study of plant-derived cannabis extracts also documented delayed ALS progression during early stages of the disease.
As a result, some experts are calling for clinical trials to assess the efficacy of cannabinoids in modulating the treatment of ALS progression. Writing in the American Journal of Hospice & Palliative Medicine in 2010, a team of investigators reported, “Based on the currently available scientific data, it is reasonable to think that cannabis might significantly slow the progression of ALS, potentially extending life expectancy and substantially reducing the overall burden of the disease.” They concluded, “There is an overwhelming amount of preclinical and clinical evidence to warrant initiating a multicenter randomized, double-blind, placebo-controlled trial of cannabis as a disease-modifying compound in ALS.” Authors of a 2016 review in the journal Neural Regeneration Research echoed these findings, opining: “[T]here is a valid rationale to propose the use of cannabinoid compounds in the pharmacological management of ALS patients.”
MEDICAL MARIJUANA PATIENT WITH ALS OUTLIVES HER DOCTORS
Published in full in The Examiner.
In April, Cathy Jordan sat on a panel at the Cannabis Therapeutics Conference in Arizona. Before taking the stage, she discussed the medical use of cannabis for ALS with Jahan Marcu, the Philadelphia Medical Marijuana Examiner.
Cathy Jordan first noticed something was wrong in summer of 1985 when she couldn’t pick things up. Her muscles weren’t responding. In 1986, she was diagnosed with ALS (Amyotrophic Lateral Sclerosis). ALS, also known as Lou Gehrig’s disease, is characterized by the death of motor neurons leading to loss of limb control, breathing, swallowing, speech and widespread cellular dysfunction. Most cases of ALS are sporadic; it is not a viral or autoimmune disease.
“Most people start using a feeding tube because they are afraid of choking to death”, says Cathy.
In 1986, she was given 3 – 5 years to live according to her neurologist. Nearly 3 decades later, she is still alive and living with ALS.
“All my docs are retiring or dead. I’ve outlived 5 support groups and 4 neurologists,” said Cathy. This actually posed a problem for Cathy who lost her social security benefits because she lived passed her expiration date. The state of Florida said her ID and regular documentation wasn’t good enough to prove she was alive and to continue to receive benefits. She had to ask her neurologist to fill out paperwork to prove she was still alive.
Mrs. Jordan began using Cannabis from a Florida grower to treat her ALS in the late 80’s. “Donny Clark provided my medicine, grown in the Myakka River Valley…he was busted and sentenced to life in prison, and that strain of Cannabis was lost.”
“You know, they say the fountain of youth is in Florida. Maybe it was something in the soil that made this plant helps me…and I don’t understand why doctors wouldn’t study me. But I still would like to know why this is helping me.”
At first, doctors wouldn’t accept thatcould be responsible for Cathy’s extended life span. Other doctors thought that smoking anything would impair her lung function and even threatened to have this paralyzed women committed, simply based on the fact that she thought Cannabis was actually helping her.
“I visited a neurologist at Duke University. When I told him that I was smoking Cannabis, he didn’t know what to do with me. He was afraid. He wouldn’t even take my blood pressure because I was using an illegal drug.” Cathy adds: “I asked my docs if they would take a drug if it was neuroprotective, an antioxidant and an anti-inflammatory. They say ‘yes’ and ask me if I know of one. Cannabis, I tell them.”
Nearly three decades later, the science has caught up with this miracle patient. Scientists created a mouse with ALS, which was very exciting for Cathy. Research has shown that THC and other cannabinoids can benefit mice with ALS. The mounting evidence of cannabinoids halting the progression of ALS has started to change the attitudes of doctors and prominent researchers have recently called for ALS clinical trials with Cannabis or cannabinoids.
“They all agree today that I should smoke Cannabis,” says Cathy. “Twenty six years later, my original neurologist fought [successfully] to make sure Cannabis is legal for patients in Delaware.”
Researchers think Cannabis may help ALS patients relieving pain, spasticity, drooling, appetite loss and has minimal drug-drug interactions and toxicity.
“There are ALS patients associations that fight for the right of patients to die with dignity. But what about my right to life?” asks Cathy. “Keeping my medicine illegal removes my right to life.”