Part of a group of rare degenerative neurological conditions, amyotrophic lateral sclerosis (ALS) causes muscle stiffness and cramping that can be extreme. Difficulty swallowing, slurred speech, and muscle twitching are also markers of this progressive disease, often named for New York Yankees baseball player Lou Gehrig, who infamously had his career cut short in 1939 following his diagnosis. The condition also is known as motor neuron disease (MND) for the way it kills neurons that control voluntary muscle movement
Fifteen people each day are diagnosed with the incurable disease, according to the ALS Association. Treatments include prescription medications as well as holistic options, such as speech therapy, breathing exercises, and medical marijuana.
The prognosis for ALS is poor and few patients live beyond five years with the disease, although there are notable exceptions. Physicist Stephen Hawking lived for more than half a century with ALS, but his case was an anomaly.
What has current research told us about how cannabis may be able to improve the quality, or even the quantity, of life for patients with ALS?
Research has been encouraging in the treatment of ALS with cannabis with a number of studies and clinical trials leading the way.
A 2010 study published in the American Journal of Hospice and Palliative Care found that cannabis was effective in addressing issues associated with ALS. Researchers described the powerful antioxidative, anti-inflammatory, analgesic, appetite-stimulating, muscle relaxing, and neuroprotective properties of cannabis. All of these properties could pertain to symptom management of ALS, according to the authors of the study. In addition, delayed onset and slower disease progression were observed in mice with ALS. Based on all these findings, researchers made a strong recommendation for clinical trials of cannabis to treat ALS.
In 2016, a literature review published in the journal Neural Regeneration Research expanded on the claims of the 2010 study. The authors of the review concluded that “there is a valid rationale to propose the use of cannabinoid compounds in the pharmacological management of ALS patients. Cannabinoids indeed are able to delay ALS progression and prolong survival.” However, they did note the need for studies performed on humans and targeted clinical trials.
One such clinical trial is presently under way at the Gold Coast Hospital and Health Service in Queensland, Australia. The trial involves 30 participants with ALS or MND. The patients will alternately be treated with CBD oil or a placebo and the study is estimated to wrap up in January 2021.
These research studies and trials have paved the way for some ALS patients to integrate cannabis into their therapeutic treatments.
Just before his 40th birthday, Sam Jundef of Marlboro, New Jersey, was diagnosed with ALS. In the four years since his diagnosis, the once-athletic father of two cannot move, speak, or breathe without assistance. Sam has gained some relief from vaping marijuana, but the process is arduous and involves disconnecting his ventilator.
Because of these challenges, Sam and his wife, Jessica, have been fighting for access to transdermal medical marijuana patches in New Jersey. Jessica lamented to New York City's WPIX-TV in 2018 that, “He's 43 years old. He can't walk. He can't talk. He can't eat. He can't breathe on his own and, like, why can't we provide things for him that are going to make his life easier? Why should my husband, who has ALS, who's dying, whose every day is precious, why should he have to suffer a minute?"
There may be good reason why ALS patients and their loved ones are battling for legal access to cannabis medicine. Cathy Jordan, a retired resident of Parrish, Florida, has been living with ALS since 1986. With an average survival rate for ALS patients falling between two and five years, Cathy's longevity is exceptional. She credits medical marijuana with stopping ALS in its tracks. Cathy chronicled her journey in Florida Food & Farm in 2017: “I turned 36 on New Year's Day 1986. But during that first week, I knew I had ALS. I was hoping beyond hope I didn't have ALS...I started choking on my own saliva. I didn't want to end my life like that.”
Then, in 1989, Jordan turned to medical marijuana and her life changed: “I smoked my first Myakka Gold. I'm convinced that whatever was in that pot stopped my disease.”
Jordan's survival story is an unusual one but may provide hope to some ALS patients who have tried other treatments that have failed. What do the experts have to say about cannabis as a treatment for ALS?
What the Experts Say
Dr. Dale J. Lange, Chairman of Neurology, Neurologist-in-Chief, and Professor of Neurology at Weill Medical College of Cornell University in New York, has initiated a clinical trial to test the effects of cannabis on ALS. Lange told HuffPost in 2015: “I am very interested in looking into the effects of high CBD/low THC in patients with ALS and UMN predominant motor system disease.”
That eminent professionals in the field such as Lange are probing the possibilities is a hopeful sign, but there is much more work to be done to ensure legal access for patients in need.
The Bottom Line
A burgeoning body of evidence indicates that cannabis could work as part of a comprehensive treatment plan for patients with ALS.
Featured Image illustrated by Allena Braithwaite/Weedmaps