Free online course: learn how to be an effective Parkinson’s campaigner
Resources & Tools
Author: Parkinson's Life editorsPublished: 30 June 2016
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A new educational course gives people with Parkinson’s and their carers the tools to become better campaigners
The European Patient Ambassador Programme (EPAP) is a free online course for anyone affected by Parkinson’s disease and other chronic conditions. The course teaches patients and their carers the skills and knowledge they need to represent themselves successfully and become involved in advocacy. More than 500 patients have completed it so far.
Divided into seven modules, the programme features classes on how to access reliable information become involved in research and work with the media. There is a new module on participating in healthcare conferences with input from a specialist patient advisory group.
EPAP is open to patients facing all conditions, although they are an organisation specialising in respiratory conditions. The Dutch-language EPAP launched in Amsterdam at the European Respiratory Society (ERS) Congress in February and there are plans to translate EPAP into further European languages, with Italian and a French versions launching later in the year.
The EPAP website also contains further resources in additional languages and news on patient involvement.
What does it mean to be a Parkinson’s advocate?
Advocacy – or campaigning – is a way you can make the voice of people with Parkinson’s heard. It helps to increase the power and influence of your organisation. It could be a campaign raising awareness of the need for greater support for carers; or more Parkinson’s nurses; it could be lobbying for a certain drug or treatment to be fully reimbursed. Advocacy is about making a change for the people you represent.
To mark International Women’s Day, we share our campaign highlights
21 hours ago
Could Parkinson’s disease originate in the gut?
A new body of research has highlighted a potential link between gut health and Parkinson’s, with several studies presented at the Society for Neuroscience’s annual meeting in San Diego, US. One study focused on alpha-synuclein – a protein that can cause brain cells to die and contribute to the condition’s onset. As part of the study, the researchers created a mouse model of Parkinson’s by treating the mice with rotenone (an ingredient used in pesticides). This was found to increase clumps of alpha-synuclein in the gut, suggesting the protein may originate in the digestive system before moving to the brain. Commenting on the research presented at the event in a press release, assistant professor of neurosurgery Sonia Villapol said: “When it comes to neurological disorders, we cannot target only the brain. Everything that happens in the gut has an impact on the brain.”
Is dry eye disease common in people with Parkinson’s?
Dry eye disease can involve symptoms such as a lower blinking rate and typically occurs when the eyes are not effectively moistened by tears – leading to discomfort and possible vision loss. Now, a recent study from Japan has investigated the previously underexplored relationship between dry eye disease and Parkinson’s. As part of their research, the team analysed 13 studies published between 2004 and 2022, which involved more than 1,500 people with Parkinson’s. Five of the reports highlighted the prevalence of dry eye disease in people with the condition – with 61% experiencing symptoms. “Our findings emphasize the need for clinicians to be vigilant of the presence of dry eye disease when managing [people with Parkinson’s],” the researchers wrote. However, they noted that more research is needed – especially “future large-scale studies” – to help understand the relationship between dry eye disease and the condition.
Highlighting dental care needs among people with Parkinson’s disease
Researchers from the University of Copenhagen, Denmark, have published a new study looking into dental care among people with Parkinson’s. Using a national register to obtain data relating to dental care between 2015 and 2019, the team identified 6,874 people with Parkinson’s, whose data was then compared to a control group of 34,285 people without the condition. A key takeaway from the five-year study was that a larger portion of people with Parkinson’s were not regular users of the dental care system – 21%, compared to 16.9% in the control group. The findings published in the journal ‘Community Dentistry and Oral Epidemiology’ also revealed that people with Parkinson’s utilised more dental-related treatment services than those in the control group – such as fillings and extractions. The researchers concluded: “This knowledge can be used by clinicians and decision-makers to ensure the optimal dental care for persons with Parkinson’s.”