5 posts tagged “marijuana”

Cannabis for PD treatment? Member Ian says it’s something to shout about

Posted June 15th, 2017 by

Member Ian (Selfbuilder) blogs and vlogs about using cannabis products to treat his Parkinson’s disease symptoms, even though marijuana (including medical marijuana) is illegal and stigmatized where he lives in the U.K. Why is he speaking up? “I know that I would not be here now if it wasn’t for the relief provided by my medicinal cannabis,” he says.

Parkinson's and cannabis

Tremors “through the roof”

Ian has been living with Parkinson’s disease symptoms since the mid-1990s. At one point, his tremors were “through the roof,” he says. He experienced severe side effects while on prescription medications for PD – including nausea, acid reflux, heartburn and irritable bowel syndrome that kept him from sleeping and worsened over time. He searched online for natural relief for tremors and Parkinson's and cannabisread accounts of people successfully treating their PD symptoms with different forms of cannabis. “I tried a little and was amazed at the effect it had,” he said

The U.K. has approved one cannabis-based treatment as a prescription medication for multiple sclerosis, called Sativex, but marijuana itself is not legal as a treatment for PD or other conditions. The U.S. FDA has not recognized or approved marijuana as medicine and says the purity and potency of it can vary greatly. Neurology experts like the National Parkinson Foundation say more research is needed on medical marijuana as a treatment for PD because studies have been inconclusive so far, and it can even be harmful for some patients with mental health or psychological symptoms.

Ian says his doctors are aware of the potential benefits of cannabis as an alternative treatment for Parkinson’s but declined to prescribe it because it’s not licensed as a PD treatment in the U.K. So Ian has sourced cannabis products on his own and chronicled his positive experiences on his personal blog and YouTube channel, and – in the spirit of openness – here on PatientsLikeMe.

Going viral

Ian’s initial video about his tremor control using cannabis went viral (with more than 45 million views online), and a Polish medical marijuana website contacted him with a box full of cannabidiol (CBD) products to try. He admits he was “initially skeptical” but ended up being pleased with the relief CBD products offer him. So he added reviews of medicinal cannabis products like Charlotte’s Web and Olimax CBD oils and CBD tea to his vlog.

Parkinson's and cannabis

 

Ian’s reviews resemble a cooking show – with ingredients like solid CBD oil mixed with coconut oil in a saucepan, melted down and then solidified and eaten.

 

For Ian, CBD oil helps alleviate tremors, anxiety and dystonia in his feet, and the effects last four to eight hours.

What’s cannabidiol, or CBD? It’s a compound found in cannabis known to have milder psychological effects than (whole-leaf) “street” marijuana. Cannabidiol is one type of a cannabinoid – the chemicals in cannabis plants that may be responsible for the various effects of marijuana. Just to break it all down: there’s cannabis (the plant), cannabinoids (the name for all chemicals in the plant) and cannabidiol (the specific cannabinoid found in the products Ian uses).

Many CBD products being sold online come from hemp plants and are very low in THC (the mind-altering cannabinoid, primarily responsible for the high associated with marijuana use). Ian says the CBD oil he uses contains less than 0.2% THC, in compliance with European Union laws. (Read up on both state and federal U.S. laws here.)

News outlets in the U.K., including Metro and BBC Radio (pictured below), have picked up Ian’s story about treating Parkinson’s with cannabis.

Parkinson's and cannabis

Cannabis treatments got him through his hardest time with PD, when he couldn’t tolerate prescription drugs and wasn’t sure if he was a candidate for deep brain stimulation (DBS).

“I was able to get some relief from medicinal cannabis, which made life tolerable,” he says, noting that the side effects of CBD include a mild high (which he considers undesirable) and increased tiredness (beyond his usual PD-related fatigue).

DBS journey

Ian ultimately learned that he was a good fit for DBS, and he had his implantation surgery in April 2016. His blog (called “DBS – A Complete No Brainer”) follows his DBS experience, from his surgery and recovery to the day-to-day “challenges and victories.”

He currently doesn’t take any prescription treatments for PD. Now that he’s had DBS surgery, he still uses cannabis products to alleviate his symptoms “when the DBS needs some assistance.” He says having DBS hasn’t changed the effects of CBD products he uses, for better or worse.

“Other people may not get the relief from medicinal cannabis that I do – everyone is different and everyone’s PD is different,” he says. “Talk to your doctor about it. Many are open to discussion. The PD meds are well tolerated and effective for many PD sufferers, but not for me.” As always, talk with your physician before starting any type of new treatment.

 

Addressing the stigma

Ian says medical marijuana use isn’t as socially accepted in the U.K. as it is elsewhere. “I believe there is less of a stigma, and wider acceptance of its use as a medicine, in other European countries,” he says. “People are slowly waking up to it, though, so it will hopefully become a more mainstream treatment in the not-too-distant future.”

BBC News reports that medical marijuana is gaining support among doctors and politicians in the U.K., amid concerns about falling behind other countries.

Ian plans to continue spreading the word about cannabis treatments. “I am open about sharing my experiences because it could help others in the same situation as me,” he says.

 

“I believe that it is important that this plant is legalized for medicinal use, and that will never happen if those who benefit from it don’t shout about it!”

 

On PatientsLikeMe

A 2015 survey of more than 200 members with certain conditions who use medical marijuana found that:

  • 74% believe it is the best available treatment for them, with fewer side effects than other options and fewer risks
  • 93% say they’d recommend medical marijuana treatments to another patient
  • 61% said their healthcare provider is supportive of their medical marijuana use

See how many members report using cannabis or medical marijuana and for what symptoms or reasons. Members of the PD community have reported using various forms of cannabis to help treat symptoms such as pain, stiffness/spasticity, muscle tension/dystonia and restless legs syndrome.

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Q & A with Dr. David Casarett, author of “Stoned: A Doctor’s Case for Medical Marijuana”

Posted July 22nd, 2015 by

If you’ve been following the blog lately, you might already know Dr. David Casarett – he’s a professor at the University of Pennsylvania’s Perelman School of Medicine and the author of “STONED: A Doctor’s Case For Medical Marijuana.” He recently worked with PatientsLikeMe on a survey that asked members how they felt about marijuana, and the results were just released last week. Below, read what David had to share about the inspiration behind his novel, his thoughts on online communities like PatientsLikeMe and the intertwined future of marijuana and medicine.

 

What inspired you to write “Stoned: A Doctor’s Case for Medical Marijuana?”

A patient – a retired English professor – who came to me for help in managing symptoms of advanced cancer. She asked me whether medical marijuana might help her. I started to give her my stock answer: that marijuana is an illegal drug, that it doesn’t have any proven medical benefits, etc. But she pushed me to be specific, in much the same way that she probably used to push her students. Eventually I admitted that I didn’t know, but that I’d find out. I then learned of the use of cannabinoids like cannabidiol for pain, obesity, anxiety, and more. Stoned is the result.

Inside the book, you say “For Caleb. I hope he found the relief he was searching for.” Can you share a little about his story and why you dedicated the book to him?

I describe my meeting with Caleb in the first chapter. He was a young man with advanced colorectal cancer who drove his RV to Colorado to get access to medical marijuana. He got there, and marijuana was legal, but he couldn’t afford it. He had access to other legal drugs like morphine and ativan through his hospice, but he didn’t use them because they didn’t work for his pain, and made him feel sick. The only thing that worked for him–marijuana–was out of reach.

Sounds like you went through some interesting research experiences while you were writing the book. (Pot wine? Marijuana paste on your leg?) How did those experiences influence your perception of marijuana as medicine?

I was trying to understand what the best way is to get the “active ingredients” of marijuana into people. I saw lots of ads for various methods, and all sorts of products are available, but I wanted to know what works. It turns out that some methods, like marijuana tea or beer or wine, aren’t very effective. But others, like vaporizing, definitely are.

What do you think is the biggest misconception about marijuana in the medical community?

The biggest misconception about marijuana in the medical community is probably that it offers no medical benefits. At least, that’s what I thought when I started researching Stoned. Actually, there have been some good studies that have shown very real benefits for some symptoms. True, there isn’t as much evidence as I’d like. But there will be more. New research is coming on line every year, and we’re gradually figuring out whether and how marijuana works.

How do you see online communities like PatientsLikeMe contributing to the medical marijuana discussion?

I think the biggest potential contribution of PatientsLikeMe is a source of crowd-sourced science. Medical marijuana science is lagging far behind the way that people are using it. For instance, in researching Stoned, I spoke with dozens of people who were using marijuana to treat the symptoms of PTSD, but there haven’t been any randomized controlled trials of marijuana for that use. That doesn’t mean that marijuana doesn’t treat PTSD symptoms, just that we don’t know (yet) whether it does. Additionally, these communities can work together to publish guides on where to buy cannabidiol near them and stores that they recommend based on their experiences to help new patients.

We need randomized controlled trials, but those trials will take time, and money. That’s where communities like PatientsLikeMe come in. We can learn from PatientsLikeMe members what they’re using medical marijuana for, and how. And we can learn whether they think it’s working. Those reports can help patients learn from each other, and they can help researchers figure out what to focus on.

What did you find most interesting about the PatientsLikeMe survey results?

I was surprised that 87% of people weren’t at all concerned about becoming addicted or dependent on marijuana. We know that although the risk of addiction is small (about 10%), it’s very real. That risk probably isn’t enough to convince most people to avoid medical marijuana, especially if it’s helping them. But we should all be aware of those risks, so we can be alert for signs of dependence, like impairment of function, or effects on work or relationships.

You mention that the future of medical marijuana is the most interesting, yet hardest to answer question. But that said, what do you think the future holds for medical marijuana?

Some of the most exciting advances in the science of medical marijuana, to me, are related to what marijuana tells us about the endocannabinoid system – that’s the system of hormones and neurotransmitters and receptors in all of us. We don’t know a lot about what that system does, but we do know that marijuana ‘works’ by tapping into that system. The cannabinoids in marijuana trick the body by mimicking naturally occurring endocannabinoids like anandamide.

So although it’s fascinating to think about what marijuana could do, and although clinical trials of marijuana are essential, the really neat science of the future may focus on that endocannabinoid system – what it does, how it works, and how we can use it to promote health.

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