On May 9, a news station in Rochester, NY interviewed Frank De Blasé, a music writer, photographer and person with Parkinson’s. Frank says that Parkinson’s has hijacked his life causing him to think before he does anything — walking, talking, swallowing, even thinking!
Two physicians were also part of the news show — Frank’s movement disorder specialist, Dr. Michelle Burack, and the palliative care specialist who certified Frank to buy medical marijuana in the state of New York, Dr. Robert Horowitz. The interviews focus on the use of cannabis for Parkinson’s symptoms. In the end, Frank did not find cannabis helpful for his most bothersome PD symptoms but feels it has improved his sleep.
That’s probably enough for most of you. Read more if you are interested….
Robin
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wxxinews.org/post/connections-using-medical-cannabis-treat-parkinsons-disease
Notes by Denise Dagan, Brain Support Network volunteer
Using Medical Cannabis to Treat Parkinson’s Disease
By Evan Dawson and Megan Mack
WXXI AM News Connections
May 9, 2018
This 51:27 minute audio recording is an interview by Evan Dawson, the host of Connections, a WXXI public radio production, in Rochester, New York. In this program from May 9, 2018, Evan’s guests are Frank De Blase, a music writer, photographer and person with Parkinson’s, Frank’s movement disorder specialist, Dr. Michelle Burack, and Dr. Robert Horowitz, the palliative care specialist who certified Frank for a medical marijuana card in New York.
In the beginning of the audio, Evan introduces his guests and tells listeners that Frank wrote an educational and entertaining article for the City Newspaper in Rochester, NY about the year he spent researching and experimenting with medical cannabis specifically to treat his Parkinson’s symptoms. So, I started by reading and summarizing that article. Then, I went back to listen to the interview. Here are some things that stood out for me:
Frank describes in the article his experience having Parkinson’s disease as: “…I don’t have tremors or cognitive difficulty…I’ve learned how to manage sharing the same body — my body — with PD. Its like having a 4-year-old roommate living inside me, with cloven hooves and ADD and who always wants to start a tickle fight.” He tells Evan that Parkinson’s has hijacked his life causing him to think before he does anything (walking, talking, swallowing, even thinking!).
Dr. Burack – medical cannabis is not FDA approved, but is regulated by the Drug Enforcement Agency (DEA) as a schedule I drug (with heroin & LSD). When New York State approved medical cannabis physicians felt it was a political move as there is no systematic scientific research to show its effectiveness for any medical use. There is some anecdotal evidence it can help Parkinson’s pain and uncontrollable muscle spasms, but not at all most Parkinson’s symptoms.
Dr. Horowitz – can certify a person qualifies for medicinal trial of cannabis at which time that person may purchase medical cannabis at a state approved dispensary. As it is not FDA approved it cannot be prescribed, therefore it will not be covered by insurance. Frank spent about $400 on various formulations to see if it would relieve him of any symptoms.
Dr. Burack – First, do no harm. As there is no systematic scientific evidence demonstrating the effect of cannabis on those with Parkinson’s, she only knows that with Parkinson’s there is loss of neurological redundancy and, therefore less ability to compensate for the effects cannabis may have. She cannot say if any individual with Parkinson’s will have severe effects from cannabis, like hallucinations or psychosis leading to falls or hospitalization.
One medication Dr. Burack prescribes for Parkinson’s disease has three molecular compounds within the one pill. Cannabis has over 100 molecular compounds.
Dr. Horowitz – To make it more complicated, each plant has different combinations of those 100 compounds. He has a 1/2 hour power point he shared with Frank to explain what is known and unknown about medical cannabis.
His experience is in palliative care for all types of illnesses. He is not a raving fan of medical cannabis, but is grateful to have it in his toolbox for some conditions. Sadly, improved sleep does not qualify someone for medical cannabis. He cannot certify someone for an ‘off-label’ use, meaning a use that is not specified on the NY state’s approved list of uses, or he can go to jail.
Cannabis is a lower risk for long term pain management than opioids, which is an approved use in NY. Dr. Horowitz has certified several people with hard to manage pain who are taking significantly lower doses of opioids along with medical cannabis. More study of medical cannabis is definitely warranted in this area.
Frank shared that without his Parkinson’s medications he wouldn’t be able to move, but with them he moves in a jerky fashion and has speech stutters. He has already had DBS surgery to some benefit. He hoped cannabis would compensate for the Parkinson’s medication side effects causing stuttering of his speech. Dr. Burack shared this hope.
He started with a tincture under his tongue to no effect, then tried vaping with a high THC content which made him high and caused problems with his Parkinson’s. Finally, he tried vaping with higher CBD and lower THC which helped him sleep, although that is not the effect he was looking for. He also got gummy bears from California with 100% CBD to no effect. He did not try any formulation for a sustained period of time. He only tried each for a week at a time so no effectiveness can be definitely determined.
Dr. Horowitz – certifies a person for trial up to one year and no longer. He sees that person periodically throughout that year. In NY there are only tinctures, vaping and tablets in THC to CBD ratios (20:1, 9:1 and 1:1), so only 9 products. The tincture is, apparently, nasty.
A caller tried medical cannabis high dose CBD capsules for nerve pain, rheumatoid arthritis, shoulder pain and leg muscle cramping with tremendous relief. She had been getting repeated cortisone shots at a pain clinic who could not certify her for medical cannabis. She got similar rejection from her rheumatologist. Her chiropractor sent her to Dr. Broadwell with her medical history, who certified her. NY State’s medical marijuana website for those who are certified to get an appointment to purchase cannabis products cannot use Safari as a web browser. Firefox works well. Once she figured that out it was not an arduous process. Frank also found that once they found someone registered with the state to certify patients for medical cannabis use, the process is pretty easy.
29 states and DC have legalized medical marijuana and 9 states and DC have legalized recreational marijuana. Frank believes the gross sales are so high that marijuana will become legal federally, eventually.
Dr. Horowitz – says there are several obstacles to studying medical marijuana but none of those will be overcome as long as it is still a schedule I drug with heroin and LSD.
Dr. Burack – says individuals really should test various medical cannabis formulations for longer than a couple doses and by controlling as many factors as possible to really determine what, if any, effect is found. Not as many research dollars and medical attention is given to cannabis because there is so much hassle involved legally with so little potential return as compared to other, more easily studies substances and potential treatments with great potential return.