May Is ALS Awareness Month. Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s Disease, is a progressive neurogenerative disease with no cure. The life expectancy for those with ALS is 2-5 years after diagnosis. I know of 2 ALS patients who credit medical cannabis with keeping them alive for decades rather than years. This article explains the symptoms and causes of ALS. It features Cathy Jordan, medical cannabis advocate, who has lived with ALS for over 30 years.
Facts About ALS
- It is a progressive neurodegenerative disorder that affects only motor neurons which causes atrophy of nerves and muscles
- Once it starts, it progresses quickly as it affects the ability to walk, talk, write, swallow and even breathe
- It affects each individual in a unique way but almost always leads to paralysis
- The progression of the disease is not constant; there are periods of very little or no loss of function followed by periods of significant decline
- In the US, 5,000 people are diagnosed with ALS every year with an incidence of 2 per 100,000
- ALS occurs worldwide with no particular racial, ethnic or socioeconomic markers
- Military veterans are twice as likely to develop ALS as non-veterans
- While the life expectancy is 2-5 years after an ALS diagnosis, 20% live for 5 years or longer and 10% live for more than 10 years
- The level of the neurotransmitter, glutamate, is higher in those with ALS. This can lead to prolonged excitation of nerve cells, resulting in toxicity and neuron death
- Diagnosis can be difficult since ALS mimics several other neurodegenerative diseases. It is often the case where other diseases must be ruled out before a diagnosis is determined
- There are only 2 ALS prescription medications, Riluzole and Edaravone, neither of which is effective in slowing or stopping the progression of the disease. Both drugs have serious side effects
Meet Cathy Jordan, Medical Cannabis Advocate
Cathy Jordan found out she had ALS in 1986 at the age of 36. Her symptoms started the year before when she was no longer able to pick up small objects. Her fine motor muscles stopped responding. She is still alive today and she credits her medical cannabis usage with keeping her disease in check all these years. In 1989, she flew from her home in Delaware to Florida where she smoked her first joint of Myakka Gold. She had connected with a Florida grower in the Myakka River Valley. She is convinced that this particular strain stopped the progression of her disease.
In 1993, Cathy moved her family to Parrish, Florida, and started lobbying her legislators to pass medical cannabis legislation. In 1998, she help start the Florida Cannabis Action Network (Florida CAN), serving as the first president. Although wheelchair bound, she traveled around the state and to other countries, educating people about the benefits of medical cannabis by sharing her success story. Her advocacy has brought many disappointments as well as successes. A bill named after her, Cathy Jordan Medical Cannabis Act, was filed in 2013 in the Florida Senate. It would have authorized qualifying patients to possess and administer medical cannabis. Sadly, it never made it out of committee.
If this poor family didn’t have enough problems, Cathy’s husband, Bob, was arrested for possession of cannabis plants in 2013. A nosy neighbor saw the plants in their backyard and reported the Jordans to the sheriff. Bob is a disabled Vietnam vet who is a member of Florida Veterans For Cannabis. He was charged with 23 counts of cannabis cultivation and he decided to request a jury trial, claiming that the cannabis plants were strictly for medicinal purposes. Bob developed the strain specifically for Cathy’s condition. The charges were dropped, thankfully!
Cathy and Bob Jordan continued lobbying Florida legislators to legalize medical cannabis until it was finally approved by Florida voters in 2016. However, the law bans the smoking of medical cannabis which is the only delivery method that works for Cathy. She gags when she uses a vaporizer which could be life-threatening for her. In January, 2018, Cathy and Bob Jordan were determined to make her preferred delivery method legal. The couple appeared in a courtroom in Tallahassee, the Florida state capitol, to ask a judge to overturn the state law that bans patients who qualify for medical cannabis from smoking it. Their lawyers argued that banning the smoking of medical cannabis violated the constitutional amendment. Furthermore, they pointed out that the Florida Constitution allows smoking which should include the smoking of medical cannabis.
The prosecution tried to dismiss the case based on the “plaintiff’s lack of standing.” Her lawyers countered that argument by maintaining that Cathy Jordan has standing due to her debilitating illness that qualifies her to use medical cannabis. Her doctor has authorized her to use smokeable cannabis as a treatment. The judge voted in favor and overturned the ban. The state appealed the decision which was pending when Ron DeSantis became governor in November, 2018. He sided with Jordan and threatened to drop the state’s appeal unless lawmakers passed new legislation. In March, 2019, the Florida legislature passed a bill making it legal for adults and terminally ill children to smoke medical cannabis, with a doctor’s permission. It took Cathy 22 years to get to this point!
In an interesting turn of events, Greg Gerdeman, a former Eckerd College biology professor and friend of the Jordans, has started his own medical cannabis business. Gerdeman studied the benefits of medical cannabis and appeared with the Jordans on a panel to support the Florida 2016 initiative. Gerdeman is the chief scientific officer for 3 Boys Farm in Ruskin, Florida. He intends to market a strain of cannabis developed by the Jordans known as “Cathy’s Choice.” Cathy has curtailed a lot of her advocacy after her amazing victory. She hopes to live long enough to see the end of the federal prohibition on medical cannabis.
Heraldtribune.com, Victory for Cathy Jordan, “Patron Saint” of Florida Medical Marijuana, March 24, 2019
Floridafoodandfarm.com, ALS Patient Cathy Jordan: “Pot Stopped My Disease” JD Vivian, January 31, 2017
Tampabay.com, Why Can’t This ALS Patient Be Allowed To Smoke Medical Marijuana, News Service of Florida, January 25, 2018
Projectcbd.org, Medical Marijuana Patient with ALS Outlives Her Doctors, Jahan Marcu, January 31, 2014