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A new survey has revealed how many patients with Parkinson’s disease are using medical cannabis and how it helps with symptom relief.
A survey of almost 2,000 patients living with Parkinson’s disease in the US, found that 70 per cent of respondents used medical cannabis, reporting improvements in pain, anxiety, agitation, and sleep.
They asked people what type of cannabis they take, including the amounts of CBD and THC, as well as how often people use cannabis, how long they’d been taking it, which symptoms improved and which side effects they had.
Parkinson’s disease is a neurodegenerative condition, in which parts of the brain become progressively damaged over time. Its main symptoms include involuntary shaking, slow movement and stiff muscles, but people may also experience a range of other issues, including anxiety and depression, problems sleeping, and problems with memory and balance.
It is thought that around 145,000 people in the UK had a diagnosis of Parkinson’s in 2020, the majority of these are aged 50 and over.
Results showed that despite almost three quarters of patients using cannabis, only 30 per cent told their doctor about it.
Around 13 per cent of people did not know what type of cannabis they were taking, but among those who did, nearly half took higher CBD formulations and 15 per cent took similar amounts of CBD and THC.
More than 50 per cent of respondents reported improvements in pain, anxiety, agitation, and sleep.
The most common side effects reported include dry mouth, dizziness, and cognitive problems, specifically around memory and thinking.
While those taking higher amounts of THC experienced more side effects, they also saw more benefit on their symptoms, reporting more frequent improvements in depression, anxiety, and tremor.
Researchers at the University of Colorado conducted the survey of patients through The Michael J. Fox Foundation’s (MJFF) online platform, Fox Insight. The foundation advocates for the expansion of cannabis research and education for providers and people living with disease.
It is hoped that these results will help doctors advise patients on cannabis treatment and discuss the topic more openly, while supporting the design of future clinical trials in Parkinson’s.
Katherine Leaver, MD, assistant professor of neurology in the Division of Movement Disorders at Mount Sinai Beth Israel in 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.”
Dr Leaver advised patients to speak to their healthcare professional if they are considering medical cannabis as a treatment option.
She added: “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.
“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.”
New grant funds for “life changing” medical cannabis prescriptions in Jersey
Jersey residents can now apply for a grant from the Sapphire Medical Foundation
Jersey residents can now apply for a grant to fund a medical cannabis prescription, from the UK’s only medical cannabis charity, Sapphire Medical Foundation.
Thanks to new funding, patients on the island of Jersey can now apply for a grant to fully support a medical cannabis prescription.
Those selected who meet the eligibility criteria, will have their prescriptions and clinic appointments be paid for by the Sapphire Medical Foundation for a minimum of one year.
Medical cannabis was legalised for prescription in 2018 across the UK, since then the growth in patient numbers paying privately for treatment has risen exponentially.
Eligible patients can seek treatment for conditions including chronic pain, neuropathic pain, generalised anxiety disorder and fibromyalgia.
In Jersey, there are now an estimated 3,000 patients prescribed the treatment via private clinics, such as Sapphire Medical Clinics.
The cost associated with prescriptions for medical cannabis can be a barrier to what is for some people a life-changing medication.
As a result, some patients are faced with the decision between prioritising their health or other necessities – never more so than in the current economic squeeze with living costs rising.
Sapphire Medical Foundation’s mission is to reduce the economic barriers of access to medical cannabis. It was founded to relieve financial difficulties that can affect individuals who are unable to afford the costs associated with medical cannabis prescriptions.
No other charity in the UK exists with the sole purpose of alleviating the monetary burden that comes with cannabis-based treatment. Thus, the Sapphire Medical Foundation presents the only legitimate option for medical cannabis access for hundreds, if not thousands of individuals.
Kirran Gill was the first patient in the UK to receive support from the Sapphire Medical Foundation for rheumatoid arthritis, fibromyalgia and anxiety and says that because of treatment, her pain levels have been significantly easier to manage and the severe side effects from using conventional treatment (such as opioids) are less severe.
Additionally, her appetite, nausea, anxiety, and overall mood have improved. Access to medical cannabis has greatly impacted her life in a positive way.
Dr Simon Erridge, co-founder and trustee of Sapphire Medical Foundation commented: “We want to help as many patients as possible in the Island community and thank those who have made this new funding round possible.
“We are delighted to invite residents who meet our stringent grant making criteria to apply for support to access medical cannabis for a minimum of one year.”
This grant round opens to Jersey applicants on the 17 May 2022, closing 6th June 2022. Applications are open to both existing medical cannabis prescription holders, and patients who otherwise meet the grant-making criteria but have not accessed treatment to date.
Applications can be made on Sapphire’s website. All grants are made following a thorough assessment of eligibility and in accordance with fair and transparent grant making principles to available here.
The Sapphire Medical Foundation provides financial assistance to cover the costs of treatment for a minimum of one year for each patient who receives one of the grants.
Sapphire Medical Foundation will launch an additional grant round in summer 2022 which shall be open to all UK patients and those in the Channel Islands.
Research to shed light on how UK clinicians view medical cannabis
UK medical professionals are invited to take part in a new outreach project
A new research project aims to get to the bottom of why many UK clinicians are still reluctant to prescribe medical cannabis.
Medical cannabis patient and psychology student, Hallie Heeg, is inviting UK medical professionals to participate in a new outreach project, which aims to shed light on their views and knowledge around prescribing medical cannabis.
Heeg, who is originally from the US, has more than a decade of experience working in the field of addiction and eating disorder recovery – which enlightened her to the role cannabis can play in holistic healing.
After entering recovery from an eating disorder herself in 2006, Heeg began managing rehab clinics and went onto work for the Hazelden Betty Ford Foundation, the largest non-profit addiction and mental health programme in the States.
“In the addiction field it’s drugs or no drugs, it’s very black and white, but I started seeing people who were sober, using psychedelics for trauma work in a clinical way – but they were having to keep it hidden,” she says.
“I got really frustrated by that, because if as clinicians, their creed was to do no harm and to put the patient first, we should be looking at all these different types of modalities and different medications and not just putting our beliefs into one.”
Heeg self-medicated for many years before accessing a cannabis prescription, finding that it helped ease her anxiety and quieten the negative thoughts of her eating disorder.
“I’ve used it throughout the years, but more from a recreational perspective,” she explains.
“[When I got my prescription] I started seeing my anxiety decrease, I started seeing the negative thoughts going away and I was having a healthier relationship with food. Slowly I was able to reduce the prescription drugs I was on.”
The question of why
Moving to the UK after meeting her husband, Heeg got a coaching certificate and founded her own coaching and intervention service, WeRise, to continue supporting patients through recovery. Last year, she went on to enrol on a Masters programme in psychology at the University of East London.
For her dissertation she has collaborated with the UK’s drug reform charity, Drug Science, to try to understand the attitudes of clinicians towards medical cannabis.
“There are something like 1.4 million medical cannabis users in the UK, however, that’s typically those who have to source it from the illegal market,” she says.
“I really want to understand why people aren’t prescribing and why the numbers on the illicit market are so big in the UK, but yet the amount of medical cannabis users being able to access it legally is so small.”
The first step in the project is a five minute, anonymous survey for doctors and prescribing nurses across the country.
“There are not a lot of studies around medical cannabis in terms of doctor’s knowledge, particularly in the UK, because it is so new,” says Heeg.
“Myself and Drug Science are hoping to raise awareness around this and from a patient advocate standpoint, but equally from a medical and research standpoint, help inform them on how they could actually become prescribers.”
She adds: “It will also help us with making decisions and determining policies, by really understanding what the views of the medical community are, why they believe this and how we can debunk any myths around it.”
Medical cannabis and eating disorders
After completing her Masters, Heeg plans to open her own eating disorder clinic and treatment centre.
Having seen the benefits of medical cannabis both personally and through her clients, she would like to see more research and discussion around its use in these conditions.
“I really have seen great results with it, typically in anorexics and bulimics, and my hope is that we can play a part in doing more research around that,” she says.
“Every week we hear about how eating disorder services are in crisis, there’s a shortage of beds, the number of adolescents struggling is rising – it’s the number one mortality among any mental illness. And yet we don’t seem to put a lot of effort into research around that when it comes to medical cannabis.”
However, her colleagues in the field – and that of addiction – have been reluctant to engage so far.
“When I sent my survey out to those contacts, I got several responses back saying ‘I work in addiction, why would I take the survey?’ And since I sent it out to my eating disorder network, I haven’t gotten a response back,” says Heeg.
“It feels a little vulnerable for me to kind of put this research out there, because there’s a community that I’ve been a part of that also looks at it as this gateway drug.”
She adds: “It’s been challenging, to be honest with you, to find clinicians who are even interested in taking a survey with the word medical cannabis in.”
Doctors and prescribing nurses in the UK can complete the anonymous survey here
Fibromyalgia diaries: Travelling as a medical cannabis patient
Medical cannabis patient, Julia Davenport, on the challenges of travelling with a prescription.
While cannabis oil has dramatically improved fibromyalgia patient Julia Davenport’s quality of life, it has brought with it new challenges when it comes to travel, as she explains here.
Chronic pain has a nasty habit of getting in the way of doing the things you love.
My big passion which I share with my husband, and I guess our one extravagance, is jetting off to far flung places.
Over the years, however, fibromyalgia, arthritis and aching joints have conspired to make travelling evermore arduous.
Now in my 70s with various replacement parts, difficult terrain is one of the biggest barriers to exploring new places.
Certainly, my husband’s bucket list destination, the Galapagos Islands, is on my no-fly list. I would have adored to go there at some point, but navigating those volcanic rocks, even with my walking stick, would be a nightmare.
Familiar holiday spots closer to home are also becoming increasingly inaccessible. Every year our extended family visits the same Northumberland cottage, which is at the bottom of a steep bank.
In years gone by, I’d be fine to walk down to it through the working farm in which it stands. Now, because my back and shoulders have deteriorated, I have to drive right to the door.
Finding ways to compensate for the things you can no longer do is a constant theme with chronic pain conditions.
Aside from mobility challenges, another restriction on travel with rheumatological conditions can be the weather, and humidity can play havoc with chronic pain. I’d love to go to Central America, for example, but I just couldn’t tolerate the heat and humidity.
Having said that, although hot dry weather is far better than the cold British winter, the difference is not enough to drag me away from my family at Christmas time.
For all my gripes about life on the road, though, traveling remains my great joy, and discovering medical cannabis and CBD has definitely helped; although it’s not all plain sailing.
Travelling with medical cannabis
In November I’m returning to South Africa, a place I’ve visited a few times and which has a special place in my heart.
On previous visits, because we’ve flown via Dubai, I’ve not taken medical cannabis or CBD with me.
There is no way I’d risk taking cannabis with me to the UAE, where people have apparently been arrested and put in jail for having codeine, never mind anything else, despite having a prescription for it.
They have a ridiculously long list of substances that they deem addictive which you can’t have. There are things you can apply for permission to take, but I just wouldn’t trust that I wasn’t going to get arrested.
When we’ve flown long-haul through Dubai in the past, I would tend to take enough medication just for the journey. I have even flushed pain medication down the toilet on a connecting flight to Dubai just to make sure I’m not in possession on arrival.
I’ve then managed to pick up cannabis products quite easily in certain final destinations.
In South Africa there was a shop similar to a Holland and Barrett which sold CBD products legally. They were able to match the equivalent of what I was already taking to their products.
In Japan, it was also relatively easy to buy CBD over the counter, even with the language barrier.
In the past, the ease at which you can buy CBD has definitely influenced my travel choices. There are lots of countries that I’d give a wide berth to because of their approach to medication, which is often underpinned by false views on addiction.
At the same time, with so many countries opening up to CBD, travelling is getting easier and the main challenge is the routing of flights through the Gulf.
Thankfully on my next trip to South Africa we are travelling direct to Cape Town directly so I can rest easy that I won’t end up behind bars.
Guidance for travelling with medical cannabis
Some countries allow medicinal cannabis and some even recreational cannabis. Some allow CBD but others do not.
Guidance from the Medical Cannabis Clinicians Society recommends that patients always contact the embassy to check the legal situation in the country they are visiting before travelling with medical cannabis.
Some countries require a letter of proof from a clinician, some require a request to be submitted to the embassy requesting to travel, some restrict the amount of medication you are able to travel with, i.e. up to 30 days supply. It is suggested that any guidance is sought and confirmed in writing.
It is advised that travellers keep medication on their person, stored in its original packaging along with a copy of their issued prescription and relevant corresponding paperwork.
You can get an idea of the country’s stance on cannabis initially by searching for “legality of cannabis” on Wikipedia – but always check with the embassy as well.
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