Taking part to investigate CBD for Parkinson’s
We meet Charles, one of the first people taking part in a pioneering clinical trial for cannabidiol (CBD) and Parkinson’s, and his daughter Kirstie.
There are currently 145,000 people living with Parkinson’s in the UK. Between 50 and 60% of them will be affected by symptoms like hallucinations and delusions at some point in their life. These symptoms, known as Parkinson’s associated psychosis, can be challenging and distressing for people with Parkinson’s and their loved ones.
It is thought Parkinson’s associated psychosis may be caused by changes in the brain as the condition progresses. It can also be a side effect of Parkinson’s medication.
There are currently no specific treatments approved in the UK for people with Parkinson’s who experience psychosis.
To meet this major unmet need, Parkinson’s UK is funding a pioneering clinical trial in partnership with King’s College London to investigate whether cannabidiol (CBD), a compound found in the cannabis plant, is safe and effective for treating hallucinations and delusions in people living with Parkinson’s.
This pioneering research could be life-changing for people with Parkinson’s facing symptoms of psychosis. Donate now and be part of the science accelerating these research breakthroughs.
Participants make clinical trials happen
Let’s meet one of the first participants in this pioneering study, Charles Ogilvie-Forbes, and hear more about why he became involved in this important trial.
Watch a short clip on the BBC website.
Read Charles’ story
Charles is 76 and was diagnosed with Parkinson’s in 2009. He lives with his daughter Kirstie and stepson in Herst, East Sussex.
Charles first started experiencing hallucinations in 2015.
I began to see people and pet dogs. I saw my wife Michele. She died in 2009 around the time when I started to notice mild Parkinson’s symptoms. I also saw and continue to see my old dogs, Slipper and Suet. After a few minutes, I realise that these visions aren’t real.
Another time I saw dozens of people milling around my flat, completely oblivious to me. It seemed to go on for about 10 minutes. My daughter walked in and found me on the floor saying, 'Have I gone mad?'
I told my Parkinson’s nurse about it and she takes this into consideration with medicine choices and doses. The hallucinations don’t bother me much any more. I just question whether they are a product of Parkinson’s or the drugs that treat the condition. My concern is that they will get worse over time and will be difficult to control or treat.
I don’t have any current medication to treat hallucinations or delusions. In 2019 I went on a drug trial and was given Saracatinib for psychosis. It didn’t have a noticeable effect on me.
Charles
Finding out about the CBD trial
Kirstie, Charles’ daughter, shared with us how they found out about the trial:
"We heard about the CBD trial via King’s College while taking part in the hallucination drug trial for Saracatinib in 2019. We asked to be informed about the CBD trial that we heard was in the planning stage and we were emailed about it."
Hopes for the trial
Charles said:
"My hope for the CBD trial is that it can help people with Parkinson’s cope better with their symptoms and improve their quality of life. It’s not a cure but there are signs that CBD could help a lot of people with their Parkinson’s symptoms and the side effects of the drugs they are prescribed."
Doing the CBD trial has helped me better understand the impact of the symptoms of Parkinson’s and the challenges of developing treatments and therapies for a condition that is very complex. It’s heartening to meet people working hard to help reduce the pain and discomfort for people with Parkinson’s. The team is dedicated, professional and a pleasure to work with.
Kirstie
What’s involved in the trial?
This research trial is being conducted in 2 stages:
- Stage 1 is looking at the safety and dose of CBD in 24 people with Parkinson’s associated psychosis over a 6 week period.
- Stage 2 will investigate the potential of CBD to improve the symptoms of Parkinson’s associated psychosis in 120 people who experience these symptoms over a 12 week period.
Watch the video on YouTube to find out more.
Would you be interested in taking part?
Stage 1 of the trial is now complete and now stage 2 has started recruiting. Read more about stage 2 of the research and how to participate.
Find opportunities to take part in research
By taking part you can help accelerate breakthroughs.