Sialorrhea (drooling) has a marked effect on PwPs’ quality of life, but is neglected by healthcare professionals, a report by Parkinson's Europe has found
Sialorrhea (drooling) is regularly untreated in people with Parkinson’s (PwPs) despite its negative effect on their quality of life, a survey by Parkinson's Europe (Parkinson's Europe) has found.
More than two-thirds (67%) of people (of which nearly three quarters were PwPs) who took part in an October-November 2020 survey conducted by Parkinson's Europe said they had sialorrhea. Of these, more than half said they experienced the symptom “frequently” (46.6%) or “constantly” (16.5%).
The motor symptom affects swallowing and irritates skin, but the survey found, it also has an adverse impact on PwPs’ self esteem and social lives, with roughly 20% saying their speech and communication is affected, while 40% experience social embarrassment because their bodies are not ‘under control’. This sentiment has worsened during the pandemic, with respondents worrying that their face mask is wet, or that they are accidentally “spitting” at people they’re talking to.
Another downside is that because sialorrhea is often worse at night, it can disturb sleep – already a problem area for some PwPs – with many waking because their pillow is wet.
“These factors combined can lead to less social interaction and even total withdrawal, which again may reinforce depressive tendencies,” said the survey report.
“The psychological burden of neurodegenerative diseases on patients and carers is already severe. Sialorrhea can contribute to this burden,” the report continued.
The psychological burden of neurodegenerative diseases on patients and carers is already severe. Sialorrhea can contribute to this burden
Parkinson's Europe Sialorrhea survey report
Despite these problems, and the report’s finding that 86% are aware of sialorrhea as a Parkinson’s symptom, 44.5% of respondents had not discussed the issue with their healthcare professional, and were therefore unaware of the treatments available. This compares to just over a quarter of respondents (27%), who had been medically diagnosed with sialorrhea.
Furthermore, some respondents felt that their healthcare team do not fully appreciate sialorrhea’s detrimental effect on daily life.
Those who had been offered solutions by healthcare professionals, such as speech and language therapy, chewing gum and swallow reminders, felt that these were only “moderately effective” and that there was room for improvement.
Neurologist Dr Bruno Bergmans, MD, PhD, said: “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.”
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
Neurologist Dr Bruno Bergmans, MD, PhD
Read the full Parkinson's Europe Sialorrhea survey report here – there are tips to help manage the symptom on page 31.
Do you suffer from sialorrhea? What kinds of treatment have you been offered? Email firstname.lastname@example.org and tell us your stories.
Parkinson's Europe is sharing this article for information purposes only; it does not represent Parkinson's Europe's views and is not an endorsement by Parkinson's Europe of any particular treatments, therapies or products.