Several weeks ago, Ed Steger, President of the National Foundation of Swallowing Disorders (NFOSD), joined my weekly Parkinson’s LOUD Crowd class I host on ZOOM. I asked members to serve as a focus group for Ed who was interested in learning more about swallowing problems that affect people with Parkinson’s disease (PD) and also participants’ attitudes about exercise/s for improving swallowing function.
In addition to being President of NFOSD, Ed is co-inventor of Tongueometer, a tongue strengthening and biofeedback device. Ed is also a head-neck cancer survivor, and his passion for developing the Tongueometer was to provide an affordable treatment and exercise tool for clinicians and their patients which could be used at home or in the clinic.
Do You Have a Swallowing Problem?
The first thing Ed asked the group was for a show of hands as to who had a swallowing problem. Much to my AMAZEMENT and DISMAY, 2 people out of 13 in attendance raised their hand. Now, because I know all of the participants, I know that many more than two have documented swallowing problems, and in fact, one week before, one of the members had a vigorous coughing episode with laryngospasm that scared all of us on the call. Another group member with rather significant drooling had just undergone a video-swallow study that I reviewed with the patient and his spouse, and it revealed aspiration among other swallowing abnormalities.
Why Are Swallowing Problems Under-reported?
Oro-pharyngeal dysphagia is a common symptom in patients with Parkinson’s disease (PD) and related disorders, even in the early stage of disease. Dysphagia in these patients has been underdiagnosed and may be due in part to poor self-awareness of the conditions and also the underuse of validated tools and objective instruments for assessment. The EAT-10 (Eating Assessment Tool) is a common screening tool used by healthcare providers when inquiring about dysphagia. But when a group of researchers used the tool to investigate the prevalence of dysphagia in multiple countries and across multiple nationalities the degree to which a person was concerned about their swallow was not necessarily reflected in their EAT-10 score.(1). Some survey respondents expressed concern about their swallowing, but this was not reflected in their responses to the questions. Others scored high in their responses but denied that they had a swallowing problem yet when probed further they reported that they avoid certain food types, have changed their posture, always take drinks to help move material down their throats, etc. And when asked “so do you have any problems swallowing?” they still said no.
My own patient who had such vigorous coughing with a sip of water that he could hardly catch his breath fit this profile, and even when I referred to those incidents as evidence of a swallowing problem, he was adamant that he did not. Only when we reviewed his swallowing study did he acknowledge the presence of dysphagia, stating: “no one told me before that I had a swallowing problem.” Coughing during or after a meal, food or pills getting stuck in the throat , and drooling, are all common symptoms reported by people with PD, yet are not often recognized by patients as a symptom of a swallowing problem, and hence do not report it to their physicians. In addition, if when visiting their neurologist a great deal of attention is placed on gross motor symptoms such as balance or falling, swallowing issues may not be prioritized as an issue.
Are Swallowing Problems Inevitable in Parkinson’s?
Even in the general population, patients may not always report a swallowing problem, or they may consider symptoms as a part of normal aging, but in individuals with Parkinson’s this may be even more pronounced. Subtle problems presenting early in disease diagnosis may be compensated for, but as the disease progresses, cognitive and motor changes may begin to be more pronounced, and compensatory behaviors that once worked may no longer be sufficient to prevent more serious problems. Aspiration pneumonia, the leading cause of death in individuals with PD does not need to be inevitable but rather is often an avoidable problem resulting from dysphagia that may be undetected and untreated.
A systematic review showed that patients with Parkinson’s developed oro-pharyngeal dysphagia approximately three times more than healthy elderly people. (2) Dysphagia undetected or un-managed can result in clinical complications, including malnutrition, dehydration, and aspiration pneumonia, affecting quality of life and eventually increasing the mortality rate in patients.
Early detection and individualized treatment of dysphagia for each patient with PD is crucial to prevent complications of the disease and improve the quality of life. Screening an individual with PD by simply asking them whether they have swallowing problems may not be sensitive enough due to their poor awareness of the problems and reduced sensation in the oro-pharyngeal and laryngeal musculature. An instrumental swallowing assessment which enables visualization of physiology and structures can help with accurate identification of dysphagia early in a patient diagnosis and may also help to differentiate patients with atypical Parkinson’s disease diagnosis.
Are Swallowing Problems Avoidable in Parkinson’s?
Once a swallowing problem has been identified, speech-language pathologists have many tools which can help to improve and preserve swallowing function. These might include instruction in compensatory strategies identified on the instrumental assessment to be of benefit or swallowing exercises which can include resistive strengthening devices, biofeedback devices, and in some instances, even voice treatment with the Lee Silverman Voice Treatment (LSVT) showing some beneficial effects on swallow and involuntary cough functions. Treatment should always be individualized and may include one or many approaches and may change with time and disease progression.
Research indicates that in the healthy adult swallow, the tongue exerts a force on the bolus, setting into motion a series of physiologic events that are all needed for the swallow to unfold in a coordinated, highly-timed fashion. Treatment that has focused on improving tongue strength has shown favorable therapeutic outcomes for some individuals diagnosed with dysphagia. Several studies have reported benefit of tongue strengthening exercises in individuals post stroke or traumatic head injury, but a study which examined individuals with Parkinson’s demonstrated that similar to other neurological diagnosis, outcomes showed that a tongue- training therapy was beneficial for improving key aspects of swallowing with significant gains in tongue strength and subjective improvement in oral intake. The visual feedback provided by a device intervention in addition to the intraoral proprioceptive feedback provided by its tongue bulb may yield greater strength changes in comparison to traditional tongue to palate press exercises.
To read my interview with Ed Steger and Elizabeth Lipton Daly Speech-Language Pathologist and co-inventor of the Tongueometer visit: https://voiceaerobicsdvd.com/swallowing-dysphagia/new-tongueometer-device-measures-and-exercises-the-tongue/
(1) Dysphagia. 2021; 36(5): 910–918. Published online 2020 Nov 23.doi: 10.1007/s00455-020-10213-z Is Dysphagia Under Diagnosed or is Normal Swallowing More Variable than We Think? Reported Swallowing Problems in People Aged 18–65 Years
(2) J Mov Disord. 2019 Sep; 12(3): 152–160.Oro-Pharyngeal Dysphagia in Parkinson’s Disease and Related Movement Disorders.
(3) Journal of Electromyography and Kinesiology 63 (2022) 102642Effects of a tongue training program in Parkinson’s disease: Analysis of electrical activity and strength of suprahyoid muscles.
My Mission: To enlist individuals in their treatment, and help them express their personality & spirit through voice. To educate and empower. Mary Spremulli, MA, CCC-SLP * FiTOUR® Group Exercise Instructor * Certified End of Life Specialist (CEOLS) * Voice Aerobics® A Whole Body Approach to Voice Practice