I could have written this from so many different angles. The fear I faced waking up in an unfamiliar body. The frustration of struggling to find help in a medical system so geared to common ailments and diseases and learning that there is no one who can help. The disgust at how women are treated and pigeonholed as “emotional” or “depressed” – being told “Sweetheart, you’ve just forgotten how to swallow” is so demeaning and disrespectful. Being an outsider in your own life – not taking part in family meals or celebrations. Work functions and events that all center around food and champagne. Friends that don’t know how to catch up if not over coffee, and family that can’t come to visit without planning a barbecue. Or how to deal with food, food and more food being shoved in your face everywhere: magazines, billboards, TV, in the streets, friend’s houses, supermarkets, restaurants, cafés, even in your own home. And how when you’re starving, it’s pure torture.
Welcome to the NFOSD Community Forum! This forum was created in 2015 with the purpose connecting those impacted by dysphagia with others – this includes patients, families, caregivers, friends, and professionals who help treat swallowing disorders.
We have transitioned our community forum to using a Facebook platform for usability and access purposes. We have kept older posts viewable to our community by clicking on the following links: Previous Community Forum
Below you will find links to our new Forums, one designed for adults and one geared towards parents/caregivers of children and infants with feeding and swallowing disorders.
Applications for Patients with Dysphagia
Description: Swallow RehApp is the newest mobile-hosted application designed to be a natural and effective complement to the traditional swallowing rehabilitation regimen. It harnesses the power of mobile technology by providing patients with consistent exposure to their dysphagia exercise plan and related dysphagia education. Clinicians are able to customize the program in a manner that is specific to their patients’ deficits and track progress towards their goals.
Pros: The app contains a dedicated education section that allows patients to better understand their swallowing disorder. Contains nutritional resources including a 7-day dysphagia diet with recipes and pre-made shopping lists.
Cons: The app must be opened to see the alert to perform the exercises. It may be beneficial to set an additional alert/alarm on the phone using the “Clock” app to remind patients of when to perform exercises.
Availability: Compatible with iPhone, iPad, and iPod Touch; requires iOS 8.2 or later. Compatible with Android OS; requires 4.0 or later.
*Must be at least 17 years old to download the app.
Disclosure: The Swallow RehApp was developed by Endo-Education, which is an NFOSD corporate sponsor.
Description: This application provides a list of 50 pre-recorded phrases for patients and clinicians to choose from to describe a patient’s eating/drinking equipment, level of meal assistance required, diet modifications, how to take medications, and compensatory swallowing techniques. It also contains four demonstration videos of how to perform compensatory swallowing techniques.
Pros: The application allows the patient or clinician to choose the voice settings as either male or female. Phrases can be easily reset based on the patient’s needs. Each phrase includes text, audio, and a supplemental picture. This app would be useful for someone with communication or memory impairments.
Cons: Initially time consuming to delete the phrases not required by the patient under “Settings.”
Availability: Requires iOS 7.0 or later. Compatible with iPhone, iPad, and iPod Touch
*Compensatory swallowing techniques and diet modifications should be determined by a qualified swallowing clinician
Description: This application provides reminders to swallow for patients who have difficulty managing their saliva, which is sometimes a challenge for patients with a variety of neurological conditions. This simple app allows patients to set the frequency of the reminders to swallow, ranging from every 1 second to every 6 minutes. The patient can set reminders either as a tone or a vibration.
Pro: The newest version allows patients to connect to a Bluetooth headset. May help patients develop a more frequent automatic swallow pattern.
Con: This app tends to quickly drain your device’s cell phone battery. Adjusting the settings of the device to “Stand By” mode allows the device to preserve battery longer.
Cost: $0.99 (Apple), $1.49 (Android)
Requires iOS 8.0 or later. Compatible with iPhone, iPad, and iPod Touch
Requires Android 4.1 or later
Applications For Swallowing Clinicians
Description: This new application, released at the end of October 2015, is designed to help clinicians assess swallowing disorders and determine appropriate rehabilitation options. It consists of four sections: Assessment, Treatment, Therapy Finder, and Resources. This apps contains information about swallowing anatomy and physiology, the cranial nerves, treatment options, and downloadable patient handouts.
Pros: Once you become familiar with the app, you can design a treatment program for a patient and easily export this as a PDF or text file that includes instructions for the patient, sent directly to their email. There are over 45 swallowing management techniques that are included, which can be filtered by type of option (e.g., exercise, strategy, etc.).
Cons: Although you can export the recommended therapy options to a PDF/text file, you cannot add a specific regimen to each option (for example, adding “perform 10 reps three times a day”). This may be something that could be added in future updates, but you can currently work around this by adding information in the exported PDF/text file.
Availability: Compatible with iPad/iPad mini/iPhone/iPod touch; requires iOS 7.0 or later; .Compatible with Android OS; requires 4.1.03 or later
*Must be at least 17 years old to download the app.
Description: This application serves as a visual tool to help clinicians educate patients about swallowing disorders using animated videos. The video control options allow users to control the speed, pause the video, and view frame-by-frame. The application contains ten videos: 2 normal and 8 abnormal videos demonstrating the anatomy and physiology of swallowing.
Pro: Visuals help to give patients a better understanding of what is happening when they swallow. This app has the potential to improve patient’s buy-in to treatment by providing the patient with a more concrete understanding of their swallowing impairment(s).
Con: The videos of the abnormal anatomy and physiology depict only one specific impairment, which rarely exists in most patients. Videos only depict adult – not child – anatomy/physiology.
Availability: Requires iOS 8.0 or later. Compatible with iPhone, iPad, and iPod
Description: This clinician-focused app allows swallowing clinicians to quickly document observations and data relevant to swallowing evaluations at the bedside. You can record results of the oral mechanism examination and bedside swallow trials. You can also document recommendations for diet and positioning modifications, treatment, and follow up. The information entered into this app can be exported as an editable report, printed, or e-mailed. Information can be saved on the app for later reference.
Pro: This app reduces the need for paper note-taking and charting. Provides a detailed template for clinicians to follow during swallowing assessment. Clinicians can save data on the application to use for later reference.
Con: If the device (iPad) is not protected with a password, the information stored in the application is not compliant with HIPAA standards. If printing or emailing the report, users must assure that they are using a secure connection.
Availability: Requires iOS 8.0 or later. Compatible with iPad only.
*Clinicians should check with their IT Department if they are unsure if the app and device is HIPAA compliant prior to entering sensitive data.
Continuing Education Opportunity
If you are a clinician interested in learning more about swallowing apps, please visit Endo-Education’s website to view the online course: “iPhone Apps for Voice & Swallowing Disorders.” This course is $25 and upon completion, you can receive .05 CEUs. This course was designed to offer information to clinicians on how emerging technology can impact the delivery of treatment for voice and swallowing disorders. Endo-Education is a partner of the National Foundation of Swallowing Disorders.
Are We Missing Any?
If you are aware of other dysphagia apps for patients or clinicians, please share these with us in the “Comments” section below. We will review and add them to our list. If you use any of the apps listed above, we invite you to share your feedback below.
Breaking news – The Swallow Expansion Device (SED) – a potential game changer for patients with profound oropharyngeal dysphagia. In early January 2015 the SED was implanted into Jeff Mauerman, a cancer survivor who is feeding tube dependent due to oropharyngeal dysphagia. This is the first FDA Approved Clinical Trial that allows a Medical Piercing to Control a Body Sphincter (Part 1 of 2)
Byline: Ed Steger, President, National Foundation of Swallowing Disorders
Disclosure: Dr. Peter Belafsky is the Medical Director of the National Foundation of Swallowing Disorders.
[Editor’s note. This story is based on an interview between Jeff Mauerman and Ed Steger that was conducted on February 4, 2015. This is five weeks after surgery and two months before he will know the extent, if at all, to which he will be able to swallow again.]
Laura Michael, nutritionist and NFOSD board member, shows us various ways to thicken your liquids. Watch the video below!