The Parkinson Alliance, an affiliate of DBS4PD.org, released its 26th survey this  fall,  entitled: “Swallowing and Parkinson’s disease: The Patient’s Perspective.

An introduction and summary of salient survey findings are discussed in the post, but readers are encouraged to view the entire study by following the link below.

People with Parkinson’s disease (PWP) experience numerous symptoms beyond the cardinal signs of Parkinson’s disease (PD): slowness of movement, balance problems, tremor, and rigidity. One such symptom is swallowing difficulty, which is also known as dysphagia. Swallowing dysfunction has been reported to lead to isolation, emotional disturbance, additional medical problems, and even mortality.

The incidence of swallowing dysfunction in PD ranges from 30 to 52%, though some research has indicated that up to 90 to 100% of individuals with advanced disease stages of PD develop swallowing dysfunction, and frequency data for swallowing dysfunction vary widely according to underlying classification, measuring method, and disease stage. Swallowing difficulty can lead to aspiration (entry of foreign objects into one’s airways), which can result in choking or pneumonia, the latter being a leading cause of death for individuals with Parkinson’s disease .

Self-reported swallowing difficulties were highly prevalent for the participants in this study: 67% of the participants reported that they experience swallowing difficulties, with 24% reporting moderate to severe swallowing difficulties and 43% of participants reporting mild difficulties with swallowing.

Despite the high report of swallowing difficulties, only 34% of the participants have had a swallowing evaluation.

Disease duration more so than age appears to be a better predictor for increased swallowing difficulties, and The Advanced Disease Duration group (11+ years) for both younger and older participants reported symptoms in greater frequency as compared to the Early Disease Duration and Advanced 6-10 Years Disease Duration groups, suggesting that disease duration increases the risk for swallowing difficulties for individuals with PD.

The majority of the participants in this survey were unaware of common swallowing assessment procedures, and even fewer reported having had a swallowing assessment or discussed treatment, despite the high rate of individuals reporting swallowing difficulties.

A current model proposed by Braak et al* lends support to the presence of speech and swallowing abnormalities as early motor signs of PD, and even at preclinical or prodromal stages of the disease. The lack of reported symptoms by patients early on, may represent some ability to compensate for these subtle changes. Drooling is a common symptom reported by many patients referred to me for an evaluation, and yet, patients are often surprised when I suggest that it is an indication of a changing swallowing mechanism.

The authors of the Parkinson Alliance report sum up their findings aptly:

It is important for people with Parkinson’s disease to be proactive about noticing signs and symptoms of swallowing difficulties and to request an evaluation/treatment by a Speech Language Pathologist knowledgeable about Parkinson’s and who specializes in swallowing.

I would add that a clinical swallowing assessment and baseline instrumental exam should be a part of patient’s initial comprehensive evaluation with a speech-language pathologist. Obtaining baseline data can help to identify patients at risk, provide goals for initiating treatment early, and also support the recommendation for swallowing exercise/s, which show promise for helping to improve and preserve swallowing function.

A patient uses a video-recording of swallowing exercises for home practice.

A patient uses a video-recording of swallowing exercises for home practice.

To read the full report please go to: http://www.dbs4pd.org/media/file/DBS-SwallowingReport-withReferences-web-2017.pdf

If you would like hard copies of this report  call,  1-800-579-8440.

Braak H, Del Tredici K, Rub U, de Vos R, Jansen Steur E, BraakE. Staging of brain pathology related to sporadic Parkinson’sdisease. Neurobiol Aging. 2003;24(2):197–211.