Parkinson’s Patients’ Meeting 25th October 2023
Our Patients Participation Group (PPG) organized a fabulous educational meeting for all our patients with Parkinson’s Disease and their carers at Mountwood Surgery. We had two guest speakers from the Parkinson’s UK charity. Naveena gave a fascinating presentation about all the newest research on Parkinson’s Disease (PD), including new medications, new aids, diet, and exercise. Also, how patients and carers can get involved in research projects, trial new aids, influence research directions, and donate their brains to medical science to continue research after their passing.
See below for all of Naveena’s information, with links.
Kathy is our local PD advisor, who works to support Hillingdon borough PD patients and carers, both emotionally and in helping them with applying for benefits and social support.
To contact Kathy: tel - 0808 800 0303, email - firstname.lastname@example.org
She told us about the many activities for patients with PD and their carers within the borough, mostly at Christ Church in Uxbridge, including a carers’ group, a singing group, and Tai Chi classes as well as social events and day trips.
There is a regular exercise class at Holy Trinity Church in Gateway Close, Northwood, on Mondays and Wednesdays, and there are also online Tai Chi, Exercise and Pilates classes.
These are run by Penny, who can be contacted on 01895 420409 or 07771 872592 or at email@example.com
This was the first meeting of a series of meetings which our PPG are planning on different health issues.
If you would like to support this worthwhile project or have useful contacts we would be very happy to hear from you.
The PPG works to voice your views about the Practice to the Partnership at Mountwood. All patients are most welcome to attend any or all of our monthly meetings.
For more information, please contact Dr Liz Hermaszewska (via reception at the surgery) or our PPG team (at MountwoodPPG@gmail.com)
Parkinson's UK: tel - 0808 800 0303, email - firstname.lastname@example.org
One of the speakers on the day, Naveena Kapur, has provided useful information and links for people to discover more and to get involved in research projects:
Please see below for the links I spoke about so that people can look at anything in more detail.
· Join our online Research Support Network to receive regular emails with the latest research news, events and participation opportunities - parkinsons.org.uk/ResearchNetwork
· Find opportunities to take part in research and help play a role in making tomorrow’s treatments a reality. Search our Take Part Hub - parkinsons.org.uk/research/take-part-research
· Volunteer to help shape the future of Parkinson's research - parkinsons.org.uk/research/volunteer-help-shape-research
· Connect with like-minded people through our local research interest groups or get help setting up a brand new group in your area - parkinsons.org.uk/research/local-parkinsons-research-groups
· Catch up on a selection of recent research talks from top Parkinson's researchers - parkinsons.org.uk/research/research-events
· Read more about the Parkinson's UK Brain Bank - parkinsons.org.uk/research/parkinsons-uk-brain-bank
· Browse short summaries of all of the projects that we are currently funding through our grants and the Virtual Biotech - latest document here
· Latest research news can be found here - parkinsons.org.uk/news/news-topics/research
· More detailed research blogs can be found here, that go deeper into key topics - https://medium.com/parkinsons-uk
· Our latest issue and previous issues of Progress magazine can be read here - https://www.parkinsons.org.uk/research/progress-our-research-magazine
· Research leaflets that give a very brief overview of what getting involved in research means can be found on the shop (also shared at the event).
If you have any questions, we would love to hear from you, get in touch with us by email - email@example.com
I received a couple of queries around certain topics on the day, so below I am sharing some more information about these.
· Cue Band (watch for drooling) - I mentioned this research study during the talk. The information about the research study and how to get involved can be found here.
· Diet and Parkinson's - At the moment, there is not enough research evidence to definitively suggest that people with Parkinson's should follow one diet over another. Everyone's experience of Parkinson's is personal, and what works well for some people may not work as well for others. More information into the research behind certain diets can be read in this blog post.
· Exercise and Parkinson's - Experts recommend people with Parkinson's do 2.5 hours of physical activity a week, and it can be whatever you want. More information on physical activity and activities in the Rickmansworth area can be found here. For more information on how exercise can help some of the symptoms of Parkinson's from experts around the world, read this blog post.
· Improving sleep - Sleep problems are a common symptom of Parkinson's, and there is ongoing research into how to help manage this symptom. Problems sleeping are often seen in the early stages and may be present years to decades before diagnosis. There have been a number of research trials exploring whether melatonin can help manage Parkinson symptoms, and specifically sleep problems. For example this study found that those that took an increased dose of melatonin had a better night's sleep compared to those that did not: https://pubmed.ncbi.nlm.nih.gov/16084125/. The research team is not medically trained and so I would encourage you to continue speaking to your healthcare professionals before making any changes. You might be interested in reading more information and advice on sleep and early morning off on the following page of the Parkinson’s UK website — parkinsons.org.uk/information-and-support/sleep-and-parkinsons https://www.parkinsons.org.uk/information-and-support/sleep-and-parkinsons
· Gluten free diet - Celiac disease may manifest with neurological symptoms but no clear association had been reported between celiac disease and Parkinson’s. This article links to a case study, of a man who was diagnosed with Parkinson’s but whose symptoms seemed to reduce after taking a gluten-free diet. The researchers suggest that celiac disease may have exacerbated Parkinson’s symptoms in this case study.
Whilst this research suggests this man benefited from this change in diet, much more research is needed to understand if this if there is a link between celiac disease and Parkinson’s, and larger studies would be needed to understand whether these dietary changes would be beneficial for other people with Parkinson’s.
There is an ongoing clinical trial looking at the effect of a gluten free diet on Parkinson's. This commenced last year and is being run by the General University Hospital in Prague. It will be interesting to see the results of this study, and whether there is any more evidence that gluten free diets might be beneficial. You can read the details here: https://clinicaltrials.gov/ct2/show/NCT05238545
· Dairy free diet - A number of studies have suggested that people who drink more milk are more likely to develop Parkinson’s. But as this article explores, it’s unclear how milk may be causing the increased risk — could it be pesticide contamination or milk’s ability to lower urate levels (known to be linked to Parkinson’s)? The authors suggest that it could in fact be explained by changes in eating behaviour that people experience in the early stages of the condition (before symptoms appear) and have urged people not to limit their consumption of dairy products. We have also written a blog post looking at calcium and Parkinson's, where there is further mention of milk and the research that has been done.
· 5 remote monitoring devices for Parkinson's recommended by NICE - I mentioned these in the talk. If you would like to read more about these, you can read this news story.
· Mushrooms and Parkinson's - There has been a research paper that used numerical and computational methods to understand the potential effects mushrooms could have on neurological conditions such as Parkinson's. The paper suggested mushrooms and their components offer neuroprotective and could potentially inhibit the initiation and progression of neurological conditions such as Parkinson's. Before we can say mushrooms are beneficial for Parkinson's, we need to see preclinical studies in animals and clinical studies in humans to prove these results. Although we cannot determine if mushrooms are able to slow the progression of Parkinson's yet, they still have an array of beneficial health effects such as being a natural source of fibre, which promotes gut health by feeding the "good" bacteria in the intestines.