On May 28, 2015, U.S. News and World Report published an article titled, “A Disorder that’s Hard to Swallow,” featuring NFOSD president, Ed Steger. The article emphasizes the significant impact that a swallowing disorder can have on one’s quality of life and the need to boost funding for dysphagia research.
If you are someone who suffers from a swallowing disorder, or someone who helps care for someone with a swallowing disorder, you may be familiar with diet modifications.
Diet modifications include altering the texture of foods and thickening the consistency of liquids. Diet modifications are one strategy to increase the safety of swallowing for those with dysphagia.
Whether you are a patient, caregiver, or healthcare professional, you may have realized that there are different terms used to describe modified food textures and liquid consistencies, such as a “mechanical diet” or “honey-thick liquids.” The use of different descriptors can result in confusion surrounding the recommended and appropriate diet, which can pose a serious risk to a patient’s safety.
A multi-disciplinary team of experts has launched the “International Dysphagia Diet Standardisation Initiative” (IDDSI), proposing a framework to standardize the terminology and definitions of diet modifications.
This team has created a survey that explains the proposed framework, and is now asking for your feedback. While this survey may be more heavily directed towards healthcare professionals, we feel strongly that patients and their caregivers should have the opportunity weigh in on this matter.
The survey consists of 12 pages and can be completed online. The deadline for survey completion is May 31st. To take the survey, click here: https://surveymanager.com.au/anon/1990.aspx
The National Foundation of Swallowing Disorders, with support from Cook Medical, is offering a series of patient-centered webinars on the latest research on swallowing disorders. Experts in the field of swallowing disorders will present information on topics such as tongue stem cell research, nutrition, and aspiration pneumonia, as they relate to swallowing disorders. If you are a Speech Language Pathologist (SLP) or know someone with a swallowing disorder, please share this web page with them.
Webinar #8 (April 7th, 2015)– When Images Aren’t Enough: High-Resolution Manometry in Complex Dysphagia
Description: This presentation will review how high-resolution manometry transitioned from a research technology to a clinical tool. The opportunity to measure pressures may provide the clinician a more complete profile for planning treatment for patients with complex dysphagia. Case examples will be presented demonstrating the opportunities that manometry offers to investigate pressure events during swallowing.
Bio: Molly A. Knigge, MS, CCC-SLP, BCS-S, specializes in evaluation and treatment of swallowing disorders, as well as laryngectomy rehabilitation at the University of Wisconsin Hospitals and Clinics in Madison, Wisconsin. She was awarded board specialty recognition in swallowing (BCS-S) in 2009. Practice areas of interest include clinical application of high-resolution manometry and instrumental biofeedback in treatment of oropharyngeal swallowing disorders.
Date: April 7th, 2015 (Tuesday)
Time: 8:00 PM EST (7:00 PM CST, 6:00 PM MST, 5:00 PM PST)
Duration: About 45 minutes for the presentation and up to 30 minutes for Q&A
Cost: 2015 Members = Free! Click here to open our 2015 membership page and read about our membership benefits.
Cost: Non-members, visit our FAQ page
The NFOSD is an all-volunteer, 501(c)(3) organization and all donations, including membership fees, are tax deductible. Benefits of an annual membership include our “Swallowing Disorders can Affect Anyone” tri-fold brochure (including free mailing in the US), a discount on participation in our patient-oriented dysphagia webinars, access to our Medical Advisory and select Foundation board members on an as-needed basis, and inclusion of your NFOSD support on your resume or CV.
Fee Disclaimer: Fees must be paid online through the secure Network for Good DonateNow system. You can use a PayPal account or a credit card. The fee will be refunded if you end up with a poor Internet connection to the Webinar; it will not be refunded if for some reason your plans change and you could not attend. If you cannot afford the fee and think that the webinar would be beneficial, please email email@example.com for a fee waiver.
Please add this to your calendar. All you need is a computer with sound capabilities, a web browser, and a reasonable Internet connection. To sign up, click the link below. Once you fill out the registration, the page will refresh and there will be a confirmation message that your registration was received.
Click Here to register. Seats are limited, so register now.
We hope you are able to attend this event!
Medical disclaimer. This Webinar is for informational purposes only and should not be used as a substitute for consultation with an appropriate health care professional, as each individual’s medical situation is unique. It is important that you consult with your medical professional (e.g., physician, SLP) before implementing any course of treatment. Experiences that are new to you should be done with the help of a caregiver and when access to emergency medical care is available.
Please visit our Frequently Asked Questions page for information on becoming a member, webinar fees, time zone assistance, and other useful information.
The NFOSD would like to recognize and thank Cook Medical for their financial support of this Dysphagia Webinar Series.
Past Webinars in the Series:
Webinar #7 (February 25th, 2015) – Neurodegenerative Disease and Dysphagia (Drs. Michelle Ciucci and Emily Plowman)
Description: Neurodegenerative diseases, such as dementia, Parkinson’s disease, and amyotrophic lateral sclerosis (ALS), are incurable and debilitating conditions. The effects that neurodegenerative diseases can have on swallowing can be devastating. Dr. Michelle Ciucci and Dr. Emily Plowman have dedicated their careers to conducting research on the neurobiological processes that affect the progression of these diseases in their effort to determine better treatment options for dysphagia. Drs. Ciucci and Plowman’s research on neurodegenerative disease involves translational animal models and human clinical trials. In this presentation, Drs. Ciucci and Plowman will discuss the findings and implications of their research with a focus on swallowing and associated disorders.
Dr. Michelle Ciucci, PhD
Bio: Dr. Michelle Ciucci is an Assistant Professor in the Departments of Communication Sciences and Disorders and Surgery-Otolaryngology Head and Neck Surgery and faculty in the Neuroscience Training Program at the University of Wisconsin-Madison. Her translational research program is directed at improving treatments for voice and swallowing disorders. She works with animal models as well as human clinical populations. Dr. Ciucci’s larger research framework aims to elucidate the relevant neurobiological processes that affect disease progression and how targeted exercise may slow or reverse the degenerative processes. Understanding these mechanisms will lead to better treatments and functional outcomes for patients with Parkinson Disease, including drug discovery and repurposing along with behavior interventions. Dr. Ciucci is a board member of the NFOSD.
Dr. Emily Plowman, PhD
Bio: Dr. Emily Plowman is an Assistant Professor at the University of South Florida where she is jointly appointed in the departments of Communication Sciences and Disorders and Neurology. She teaches graduate level courses in dysphagia, medical speech-language pathology, upper aerodigestive tract dysfunction and research methodology at USF. In addition, Dr. Plowman provides clinical services in the department of Neurology for individuals with speech and swallowing dysfunction and is the Chief Speech-Language Pathologist at the USF multidisciplinary amyotrophic lateral sclerosis (ALS) clinic. Dr. Plowman serves on the Board of Directors for the Dysphagia Research Society, is a member of the Northeast Amyotrophic Lateral Sclerosis (NEALS) Consortium Ventilation Committee, the NEALS Bulbar Committee and the Medical Advisor for ‘A Life Story Foundation’ a non-profit ALS patient advocacy group. She was recently recognized with the 2013 American Board of Swallowing and Swallowing Disorders Research Award for her scientific efforts in advancing treatments for bulbar dysfunction in ALS.
Webinar #6 (January 27, 2015)– Nutrition and Dysphagia (Laura Michael)
Watch Recording Online: Click Here
Description: Managing and maintaining nutritional and hydration needs for someone with dysphagia can be especially challenging. In this presentation, Laura Michael will discuss the importance of meeting one’s nutritional needs and how to make foods and beverages safe, palatable, and pleasing. Ms. Michael will discuss her first-hand experience of caring for her father when he developed dysphagia due to Lewy Bodies Dementia and how she was able to translate all her industry knowledge and cooking skills to help her mother and others care for her ailing father.
Bio: Laura Michael earned her B.S. degree in Nutrition from the Ohio State University and then trained with one of the authors of the American Dietetic Association’s National Dysphagia Diet. Laura spent more than ten years as a Regional Sales Manager in the healthcare/food industry. During that time she educated and trained hospital, nursing home and rehab facility staffs on how to make foods and beverages safe, palatable and pleasing for their patients with swallowing disorders. In 2011, Laura started her own company, Dysphagia Supplies Direct, to help people with dysphagia live their best lives. She trains professionals and family caregivers in how to manage the food and beverage modifications necessary using techniques and products to meet the needs of each unique client. Her company offers specialty food products, many of which are not readily available outside the acute-care setting, making it possible to receive care at home, in a group home or other care setting. Her specialty is caring for those with Alzheimer’s and other Dementias, ALS, Parkinson’s disease, Stroke and Head-Neck-Oral Cancers. Ms. Michael is a board member of our foundation, the NFOSD.
Webinar #5 (December 2, 2014)– Oropharyngeal Strengthening to Improve Swallowing (Dr. JoAnne Robbins, PhD, CCC-SLP, BCS-S and Jacqueline Hind, MS, CCC-SLP, BCS-S)
Watch Recording Online: Click Here
Description: Age-related muscular atrophy, or sarcopenia, is linked to the decline in head and neck muscle strength observed with advancing age and is a key cause of dysphagia. Reduced muscle strength leads to lower oropharyngeal pressure generation for safe propulsion of food and liquid through the mouth and throat. This decline in pressure generation has important clinical implications in that older individuals are at increased risk for dysphagia when they have acute or chronic medical conditions such as stroke, head and neck cancer or Parkinson’s disease. Isometric Progressive Resistance Oropharyngeal (I-PRO) therapy for the muscles of the oropharynx is an emerging rehabilitation technique for dysphagia that strengthens the muscles of the mouth and throat. The purpose of this presentation will be to review I-PRO therapy and present data from recent studies that support its clinical use.
Bio: JoAnne Robbins, PhD, CCC-SLP, BCS-S is a Professor at the University of Wisconsin-Madison in the School of Medicine and Public Health with affiliations in the Departments of Medicine, Radiology, Nutritional Sciences, Food Science and Biomedical Engineering and is Associate Director of Research for the Geriatric Research Education and Clinical Center (GRECC) at the William S. Middleton Memorial Veterans Hospital. Dr. Robbins is the founder and director of the UW/VA Swallowing Speech And Dining Enhancement (SSWAL-ADE) program and is known nationally and internationally as a leader in the area of swallowing disorders and dysphagia rehabilitation. She has received continual federal funding for innovative clinical research from the National Institutes of Health (NIH), the Department of Veterans Affairs and the United States Department of Agriculture since 1984 while continuing a clinical practice, as it is the patients who fuel Dr. Robbins’ research program. More than 70 peer-reviewed publications demonstrates the immense impact that Dr. Robbins’ science has had not only on the profession of speech pathology, but also on the fields of neurology, otolaryngology, gastroenterology, gerontology, neuro-rehabilitation, nutrition and food science.
Bio: Jacqueline Hind is the Program Manager for the Swallowing Speech and Dining Enhancement Program and Senior Speech Pathologist at the University of Wisconsin-Madison School of Medicine and Public Health and the Madison VA Geriatric Research, Education and Clinical Center and the Director of Clinical Development for Swallow Solutions, LLC. She is a Board Certified Specialist in Swallowing, has more than twenty publications in peer-reviewed journals and holds a US patent through the Wisconsin Alumni Research Foundation.
Webinar #4 (November 4, 2014) – Aspiration Pneumonia in Patients with Swallowing Disorders (Tiffany Mohr, MA, CCC-SLP)
Watch Recording Online: Click Here
For ASHA CEU Credits: http://endo-education.com/online-ceus/ (Scroll about half way down page to find “Aspiration Pneumonia,” .1 CEUs for $25 offered through Endo-Education)
Description: Pneumonia is a breathing condition in which there is swelling or an infection of the lungs or large airways. Aspiration pneumonia can occur when food, saliva, liquids, or vomit is breathed into the lungs or airways leading to the lungs. This presentation will cover the risk factors, symptoms, assessment, and treatment for aspiration pneumonia, as aspiration pneumonia can be a serious life-threatening complication for those with swallowing disorders.
Tiffany Mohr, MA, CCC-SLP
Bio: Tiffany Mohr is a speech-language pathologist at the Department of Veteran Affairs in Houston, Texas. She works with Veterans who require Diagnostic and Treatment services in the areas of communication, cognition, respiration, swallowing, voice, and head and neck cancer. Tiffany Mohr received her M.A. degree in Communication Disorders from the University of Houston in 1999 and has been providing speech-language pathology services to those of all ages for nearly 15 years.
Webinar #3: (September 30, 2014) How to Find the Right Professional to Help with a Swallowing Disorder (Nancy B. Swigert, MA, CCC-SLP, BCS-S)
Watch Recording Online: Click Here
Description: Finding the right medical professional to help with a swallowing disorder can be very challenging. Different medical specialists address different types of problems. This webinar will describe the basics of a variety of swallowing problems. The different physician specialists will be described (e.g., ENT, gastroenterologist, radiologist). The role of the speech-language pathologist in evaluating and treating all types of problems will be described as well as what specialty certifications are needed and how a specialist can help. The function of a multi-disciplinary team will also be addressed.
Nancy B. Swigert, MA, CCC-SLP, BCS-S
Bio: Nancy B. Swigert is the director of Speech-Language Pathology and Respiratory Care at Baptist Health Lexington at their acute care facility in Lexington, KY. She is a Board Certified Specialist in Swallowing and Swallowing Disorders (BCS-S). She is an adjunct faculty member at the University of Kentucky. She has authored six publications with Linguisystems (one on adult and one on pediatric dysphagia) and she lectures extensively in the areas of pediatric and adult dysphagia. She received her master’s degree from the University of Tennessee-Knoxville. She currently chairs the American Board of Swallowing and Swallowing Disorders. She was president of the American Speech-Language-Hearing Association in 1998 and chaired the Special Interest Group on Swallowing for three years. She is on the Medical Advisory Board for the NFOSD.
Webinar #2 (August 27, 2014)— The Role of Electrical Stimulation in the Treatment of Swallowing Disorders (Dr. Christy Ludlow)
Watch Recording Online: Click Here
Description: Elevation of the hyoid and larynx help to close the vestibule to protect the airway during swallowing. Individuals with dysphagia sometimes have reduced or delayed hyo-laryngeal elevation, which can put them at risk for aspiration. Surface electrical stimulation is currently used during therapy for dysphagia. Dr. Ludlow’s presentation will provide recent information about the physiological effects of surface electrical stimulation during swallowing and what evidence is available on whether it is effective as a therapy for patients with dysphagia.
Presenter: Dr. Christy Ludlow is currently a Professor at James Madison University (JMU) in the Department of Communication Sciences and Disorders where her research interests include manipulating neural control for dysphagia rehabilitation. Dr. Ludlow received a B.S. degree in physiological psychology and an M.S. degree in speech pathology and audiology from McGill University. After completing her clinical training, she received her Ph.D. in speech pathology and psycholinguistics from New York University. Dr. Ludlow then moved to the National Institute of Neurological Disorders and Strokes (NINDS) in 1974 where she supervised grants and contracts on voice and speech research. In 1988 she moved fulltime to the intramural program and developed a laboratory program studying the neural control of voice, speech and swallowing. Dr. Ludlow received Honors of the American Speech-Language-Hearing Association in 2005 and the 2006 Award of the American Laryngological Association. Dr. Ludlow’s research covers the neurological organization and control of laryngeal function in voice, speech and swallowing, the pathogenesis of idiopathic voice and speech disorders, and the effects of functional electrical and sensory stimulation in severe swallowing disorders.
Webinar #1 (July 15, 2014)— Adult Human Tongue Stem Cell Research (Dr. Peter Belafsky)
Description: Dr. Belafsky has been preparing for an FDA clinical trial at UC Davis involving the implantation of adult human stem cells into the tongues of patients with swallowing impairments. While stem cells have been used successfully in the treatment and repair of other human organs and tissue (e.g., restoring sight to the blind), this will be the first time stem cells have been used in a process to strengthen and restore a vital part of one’s swallowing function. During this presentation, Dr. Belafsky will discuss the science behind this trial, the current status of this initiative which began almost a year ago, the Institute for Regenerative Cures (IRC) where the stem cells work is taking place, the process of growing adult human stem cells, and the anticipated target date for when this will become an FDA approved human trial which in turn will allow for the recruitment of human subjects and the actual implantation of their stem cells into tongues which have become compromised due to illness or accident.
Bio: Dr. Belafsky is Professor and the Director of the Voice and Swallowing Center at the University of California, Davis. He holds a joint appointment in the Department of Otolaryngology at the UC Davis School of Medicine and the Department of Medicine and Epidemiology at the UC Davis School of Veterinary Medicine. He is the recipient of numerous awards and grants and was the lead investigator on the World’s 2nd laryngeal transplantation. He has authored over 100 peer-reviewed manuscripts, holds numerous patents, has edited and authored 4 books, is the co-founder of two medical device start-up companies, and was the President of the Dysphagia Research Society in 2013. Dr. Belafsky’s primary research focus is the innovative treatment of profound swallowing disorders. He has created a medical device that can manually control the upper esophageal sphincter, is working on an innovative dilator for upper esophageal sphincter stenosis, is developing a comprehensive swallow propulsion system, and is evaluating the use of muscle stem cells for dysphagia rehabilitation. He has dedicated his career to improving the lives of people with profound swallowing impairments. He is also the Medical Director of our foundation, the NFOSD.
Swallowing disorders are estimated to impact 15 million American adults and countless numbers of children. That’s nearly one out of 20 people. For a disorder that is so prevalent, there is a lack of awareness. One of the primary goals of the National Foundation of Swallowing Disorders is to raise awareness of dysphagia (i.e., swallowing disorders). Over the past two years, the NFOSD has initiated a University Outreach Program to educate students in health care programs to learn more about the prevalence and impact that dysphagia has on patients.