44 posts tagged “parkinson’s”

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 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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Virtual house calls? Dr. Ray Dorsey’s promising research on telemedicine for Parkinson’s disease

Posted June 2nd, 2017 by

What if your next doctor’s appointment involved just booting up your laptop rather than trekking to a clinic or office? Neurologist Ray Dorsey, M.D., M.B.A., is making virtual house calls a reality for people with Parkinson’s disease (PD) and believes “telemedicine” is on the brink of transforming healthcare. “There’s a huge demand for more convenient care,” he says.

Dr. Ray Dorsey PD Telemedicine

What’s telemedicine? Why does it work for PD?

Telemedicine, also called telehealth, is the delivery of healthcare remotely via phone, smartphone, mobile wireless device or other tools with or without a video connection.

Dr. Dorsey, a professor of neurology and the director of the Center for Health and Technology at the University of Rochester Medical Center, has been studying and providing telemedicine for more than a decade – starting with people with PD in a nursing home in a remote part of Central New York. He says virtual visits work particularly well for PD because it’s a visually-assessed condition.

Also, due to geography, physical limitations and other factors, more than 40 percent of people with PD do not see a neurologist – putting them at greater risk for falls, hip fractures and other complications – so there’s ample opportunity to improve care.

Dr. Dorsey’s research findings

In a 2013 pilot study on telemedicine for PD, Dr. Dorsey and his colleagues found that patients who received virtual house calls:

  • Spent an average of 53 minutes per call (using technology similar to Skype)
  • Saved 4+ hours – plus gas/travel money – for each appointment (compared to the 255-minute average time spent per in-person visit and travel)
  • Felt just as well about their quality of life and level of care as patients who attended in-person visits during the seven-month study

Building on the findings of the pilot involving 20 patients, Dr. Dorsey turned to PatientsLikeMe and other organizations to help recruit about 200 patients for a larger study called “Connect.Parkinson” – which resulted in similar positive findings. In fact, patients receiving virtual care rated their care more highly than those receiving in-person care, with 90 percent of patients saying they were “satisfied” or “very satisfied.”

 

“The biggest perks? Patients found care, convenience and comfort in virtual house calls.”

In patients’ own words:

“Excellent – just wish these visits could continue.”

“The regular intervals of seeing my neurologist through a virtual visit allowed my neurologist to treat more of my symptoms that emerged gradually… I do not have that kind of awareness of how my PD is gradually changing in one-a-year visits with my regular neurologist.”

“As my wife and I live a long way from the nearest neurologist, this technology is a blessing.”

“I really felt comfortable and did not feel like I was missing anything crucial by not being there in person. It’s so nice to not have to get in the car to go to an appointment!!”

Six-foot-5-inch Dr. Dorsey says meeting with him over a web cam – where he’s seated and not wearing his clinical lab coat – “levels the playing field.”

“If you come see me in a clinic, you would be clearly be on my turf. When you see me from your home, if you don’t like me, you can just close your computer,” he jokes.

The future of telemedicine

From the get-go of Dr. Dorsey’s latest study, it was clear that there’s a growing demand for telemedicine. Most clinical trials take a while to recruit for, but not “Connect.Parkinson.” The trial page received 11,000 visitors from all 50 states and more than 80 countries, and the study was quickly at capacity. 

 

“We were actually overwhelmed by the interest,” Dr. Dorsey says, “I think there’s just a huge demand in the community to receive care from home.”

 

Virtual visits aren’t for every patient – or provider, Dr. Dorsey says, noting there’s a learning curve, technical glitches, personalities and some privacy concerns to consider. Also, virtual care shouldn’t be a substitute for in-person visits but work well as a complement to them, for example, in the months between annual checkups.

While telemedicine might become a go-to for things like PD, skin conditions, and mental health issues, it probably isn’t a great fit for conditions requiring regular lab work and face-to-face evaluation, such as lupus or cardiovascular disease. But Dr. Dorsey believes it’s poised for exponential growth as more patients and politicians (who are always budgeting for Medicare) catch onto its perks.

 

“With time, I think more people are going to say, ‘I shop online, I bank online – why can’t I get healthcare online?’”

-Dr. Dorsey.

Free telehealth for New Yorkers with PD

As part of Dr. Dorsey’s work in expanding telemedicine, anyone with PD in New York State can receive care for free through a program called Parkinson’s Disease Care New York. Get the details at pdcny.org. He hopes the program can be replicated in other states – and for other conditions – in the future.

See what PatientsLikeMe members with PD are saying about telemedicine.

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