Posted by Don Duncan
Guest blog by Jahan Marcu. Cathy Jordan was on a panel with Jahan Marcu at the Cannabis Therapeutics Conference in Arizona. Before taking the stage, she discussed the medical use of cannabis for ALS with the Vice Chair of ASA’s Medical and Scientific Advisory Board.
Cathy Jordan first noticed something was wrong in summer of 1985 when she couldn’t pick things up. Her muscles weren’t responding. A year later, in 1986 she was diagnosed with ALS (Amyotrophic Lateral Sclerosis). ALS is a disease 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 (ALS patients) start using a feeding tube because they are afraid of choking to death”, says Cathy.
After her diagnosis, she was given an expiration date; In 1986, she was given 3-5 years to live/die according to her neurologist, Dr.Fink. Nearly 3 decades later she is still alive, 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 basically 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 at the time, 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. Years later he was pardoned on the last day of the last term of President Clinton,” says Cathy, “You know they say the fountain of youth is in Florida, maybe it was something in the soil that made this plant help me…I don’t understand why Doctors wouldn’t study me—I want to know why this is helping me.”
At first Doctors would not accept Cathy’s marijuana smoking and extended life span. Regardless of what she did, “a UPENN doctor told me bluntly, I would die either from suffocation or drowning in my own fluid.” Other Doctors also thought that smoking anything would impair her lung function, and threatened to have this paralyzed women committed because she must be crazy if she thought Cannabis was helping her.
“I visited a neurologist at Duke University…when I told him that I was smoking Cannabis he turned into PeeWee Herman. 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.”
“I asked my docs: would you like a drug that is neuroprotective, an antioxidant, and an anti-inflammatory?,” says Cathy, “They then said Yes and asked me if I knew of one. I said yes, [it’s] Cannabis.”
There are ALS patients associations that fight for the right of patients to die with dignity, “But what about my right to life?” says Cathy. “Keeping my medicine illegal removes my right to life.”
Nearly three decades later, the science has caught up with this 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, prominent researchers have recently called for ALS clinical trials with Cannabis or cannabinoids.
“They all agree today that I should smoke Cannabis,” says Cathy, “26 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.