Cannabis May Offer Comfort to Huntington Disease Patients
Tiffany Daley shared her story online to give hope to others with Huntington disease—and to raise awareness about how cannabis helped her sleep better and manage non-stop shaking.
“There is tomorrow and it’s not a death sentence,” she said in a video posted to YouTube in February 2017.
Daley says she tested positive to Huntington more than 10 years ago, and that her sister was diagnosed with the disease as well.
“My mother and my grandmother passed away from Huntington disease,” she said. “It was really hard on the family. It’s hard to see somebody that you love decline like that.”
Huntington disease is a fatal hereditary brain disorder, according to the Huntington Society of Canada, which is like having “the symptoms of Alzheimer’s, Parkinson’s and ALS all in one.” Symptoms usually appear around mid-life, although children can also be affected.
“When a person starts to show symptoms, it’s usually 15 to 20 years before they die from the impact of the disease,” says Huntington Society of Canada’s CEO Bev Heim-Myers. “At this point in time, there is no treatment, but we are in very promising clinical trials right now that look at the root cause of the disease.”
Huntington gradually deteriorates a patient’s ability to control behaviour and movement. In early stages, this could mean lack of judgment or terrible anger. In later stages, patients may be unable to eat or walk. Drugs can be prescribed for symptoms like dystonia (muscle rigidity) and chorea (uncontrolled movement).
“There are some one-off anecdotes from some people in our community who are taking cannabis and they’re finding that it’s helping them,” says Heim-Myers. “There is some evidence to suggest that with dystonia, cannabis helps.”
A study published in the Journal of Huntington Disease in March collected results from seven patients with early onset Huntington disease. After they ingested cannabinoids, the chemical compounds in cannabis, there was a “marked improvement of motor symptoms mainly due to alleviation of dystonia.”
It also found they had “less irritability and apathy, as well as less hypersalivation in some cases.”
A study done in Spain in 2011, and another one in Great Britain more recently, looked at the neuroprotective qualities in cannabinoids like cannabidiol(CBD) and in cannabinoid precursors like tetrahydrocannabinolic acid (THCA). When ingested, they both appeared to slow the progression of Huntington’s in mice.
The researchers in Spain found cannabinoids to be safe in the preliminary trial and proposed a second phase. The other study, published in the British Journal of Pharmacology in 2017, found that THCA showed “potent neuroprotective activity,” which should be considered for Huntington’s and other similar diseases.
“It should be an area that we investigate further because I don’t believe there’s any good treatment today for Huntington’s,” says Dr. Michael Verbora, medical director of the Canabo Medical Clinic, which monitors how medicinal cannabis and cannabinoids in general can help patients with chronic pain or other symptoms.
Verbora has worked with patients with Huntington toward the end of their lives. He prescribed the synthetic cannabinoid Nabilone to one of them. “He became much more calm, started to get some sleep and his movements improved by probably 60 per cent,” he says. “Right now, cannabis in general is used mostly for symptom management in Huntington’s. It’s too early to tell if we give patients medical cannabis, whether that would have an effect on the disease progression. More research is needed, but it does look quite interesting in animal studies.”
For Daley, using CBD oil helped her experience some relief. In one video posted online, she shows how her hand shakes uncontrollably. After using her vaporizer, she posted a second video. Her hand, although still moving, was much more stable.
As well as Huntington’s, Daley was also diagnosed with essential tremor, a nerve disorder. She says the best way to cope is by remaining hopeful and focusing on loved ones.
“You have to live everyday like it’s your last and tell the people that you love that you love them.”