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MJFF Survey Results: People with Parkinson’s Share Experiences with Cannabis

Researcher in lab holding test tube

Many people are curious how cannabis, including marijuana, may help Parkinson’s disease (PD) symptoms. While clinical trials have not yet proven safety or benefit, many are interested in trying cannabis. Without specific recommendations on what type or dose to take for which symptoms, patients and their doctors are figuring out what works best through their experiences in the “real world.” 

To learn how people use cannabis for Parkinson’s, researchers conducted a survey through The Michael J. Fox Foundation’s (MJFF) online platform, Fox Insight. Samantha Holden, MD, MS, and colleagues at the University of Colorado in Aurora, Colorado, asked people what type of cannabis they take, including the amounts of cannabidiol (CBD) and tetrahydrocannabinol (THC). They also asked how often people use cannabis, how long they’d been taking it, which symptoms improved and which side effects they had.  

Nearly 1,900 people with PD shared their experiences in the survey. The results, recently published in Movement Disorders Clinical Practice, showed that, among survey participants:
 

  • More than 70 percent of people use cannabis. The most common way is by mouth, once a day.
  • About 13 percent of people did not know what type of cannabis they were taking. Among those who did, nearly half took higher CBD formulations and 15 percent took similar amounts of CBD and THC.
  • Many reported small improvements in pain, anxiety, agitation or sleep.  
  • The most common side effects include dry mouth, dizziness, and memory and thinking (cognitive) changes. People taking higher THC reported more side effects but also more benefit.
  • Thirty percent of people did not inform their doctor about cannabis use.

Researchers hope that these results help doctors to more effectively counsel people with Parkinson’s about cannabis. They also hope the results support the design of future clinical trials in Parkinson’s. (Learn about ongoing research at foxtrialfinder.org or clinicatrials.gov using key words Parkinson, cannabis or marijuana.)

Commenting on this study, Katherine Leaver, MD, Assistant Professor of Neurology in the Division of Movement Disorders at Mount Sinai Beth Israel in New York, New York, said,

“These survey results are completely in line with my experience so far. Medical marijuana doesn’t help everyone with Parkinson’s or every symptom of Parkinson’s. But it is a useful tool in the toolbox of treatments for the disease. And, as in this study, I’ve seen benefits for sleep, pain, anxiety and, sometimes, for motor symptoms.

Especially when using lower THC formulations, I believe medical marijuana is a fairly safe and non-toxic option that may help some people with Parkinson’s.

If you want to learn more, talk to your doctor. I know this can be tough. Some people worry their doctor might think differently of them or treat them differently. Or that their doctor might not know much about medical marijuana. Often that may be true because this is a newer area of practice and many aren’t certified to offer this treatment. (You may be able to search online for providers in your area who are certified.)

You may want to say something like, ‘I’m interested in medical marijuana. Do you have experience prescribing it? Can you help guide me? If not, do you know another provider who can?’ If you’re using medical marijuana, share what type and how it’s helping — this helps your doctor learn, too! And ask for additional guidance if necessary.

Larger, well-designed studies will help inform our guidance and recommendations. But in the meantime, it doesn’t hurt to ask whether medical marijuana may be an option to help your symptoms.”

Also sharing thoughts on these results was Katherine Amodeo, MD, movement disorder specialist at Westchester Medical Center in Poughkeepsie, New York, and assistant professor of neurology at New York Medical College in Valhalla, New York. Dr. Amodeo says:

“I think these results reflect what I generally see in my patients. Overall, medical marijuana seems to help with symptoms as reported in this survey: anxiety, sleep and pain. I encourage people to let their movement disorder specialist know if they are taking medical marijuana. This is important so we can watch for side effects. I’m typically most concerned for impact on cognition or psychosis. But I’ve been surprised by how well tolerated medical marijuana seems to be. When my patients are interested in pursuing this therapy, I advise consultation with pain specialists, palliative care physicians or other specialists who can provide more information. I do not prescribe medical marijuana because I don’t believe there is yet enough data that it could help with motor or cognitive features of the disease.”

Research such as this, directly informed by people living with disease, also supports policy efforts. The Michael J. Fox Foundation has long advocated for the elimination of federal barriers to medical research so that cannabis is treated just as any other drug or compound being researched for a possible medical use. And MJFF Senior Vice President of Public Policy, Ted Thompson, JD, serves on the board of the Council For Federal Cannabis Regulation (CFCR), a non-profit organization focused on development and implementation of federal regulations that are informed by and grounded in science, best business practices, sound public policy and social justice principles. MJFF also continues to advocate for expansion of cannabis research and education for providers and people living with disease.

To learn more about cannabis and Parkinson’s, read our Ask the MD blog or view a webinar.

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