To find out more about Parkinson’s disease surveys or to get involved, visit the EPDA website.
Is an important Parkinson’s disease symptom being neglected?
Author: Rosie Murray-WestPublished: 16 September 2021
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Drooling is an often-overlooked symptom of Parkinson’s disease – but the psychological impacts can be profound. A new survey from the European Parkinson’s Disease Association (EPDA) shows that, although there is help available, many are not receiving the best possible treatment
Drooling – an often-neglected Parkinson’s symptom – is more common than previously thought and is negatively impacting the lives of many people with Parkinson’s, according to a report published by the EPDA.
The results of a recent survey by the organisation suggest that the symptom (also known as sialorrhea) has significant social effects on people with the condition – and that these have worsened during the coronavirus crisis.
In Parkinson’s disease, drooling can occur when the swallowing mechanism is impeded, meaning that saliva builds up, and the muscles in the mouth are weakened.
More than half of respondents said they experienced sialorrhea frequently or constantly, with over 60% adding that the symptom was moderate or severe.
For 40% of respondents, the main impact that drooling had on their quality of life was as a cause of social embarrassment.
The Covid-19 pandemic has exacerbated this issue, they added, with some concerned about being seen wearing a wet face mask, or the possibility of accidentally spitting at people they are talking to. Around 20% said it affected speech and communication.
The report, which was sponsored by pharmaceutical company Merz Therapeutics, suggests that these factors could be leading to decreased social interaction and impacting self-esteem for people with the condition.
Russell Patten, director general of the EPDA, hopes that the survey will help to raise “much-needed awareness” of sialorrhea – as well as of the treatments available for the condition.”
He says: “It is incredibly important to raise awareness about the impact of lesser-known symptoms such as sialorrhea, to ensure they are appropriately addressed by healthcare professionals. If we all work together to achieve this, improvements in the quality of life – for people with Parkinson’s, their families and carers – can become a reality.”
Almost half of those who responded to the survey had not discussed drooling with a health professional. However, the study showed that even when a patient discussed experiencing drooling with healthcare professionals, the symptom was often neglected: fewer than half of the respondents had been offered any therapy for it.
The participants cited speech and language therapy as the most popular treatment, while other therapies included medications, swallow reminders, and sweets or chewing gum.
Although the survey suggested that those who receive these therapies are “moderately satisfied” with the results, neurologist and report contributor Dr Bruno Bergmans says there may be a wider range of treatments available that many people with the condition may not know about.
“These limited choices can lead to people wrongly thinking no treatment options are available,” he explained. “As a neurologist specialising in movement disorders, I would like to give you one piece of advice: if you experience sialorrhea or any other symptoms that you feel could be linked to your Parkinson’s, don’t be afraid to talk about it with your neurologist and/or healthcare professional team.
“They will be able to tell you whether there is a link with Parkinson’s and propose any treatment options that may be available.”
In the report Veronica Clark, a speech and language therapist and president of the EPDA, suggests a number of tips and tricks – including ensuring medications are taken on time and aiming for an upright body posture.
“I would strongly recommend that anybody experiencing sialorrhea discusses their symptoms with a member of their multidisciplinary team, and requests a referral to a speech therapist as soon as possible,” she added, “as they will be able to help with the sialorrhea as well as with any related swallowing difficulties.”
The EPDA survey, which launched last year, was completed by 382 people with Parkinson’s and their carers, all over the world – from Canada and Belgium to Germany and Mexico.
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