Description: This webinar was broadcast live on July 14, 2015. It consisted of a panel of patients and caregivers who have been impacted by dysphagia. The panel was moderated by a medical speech-language pathologist with expertise in swallowing disorders. Each panelist briefly shared their experience with dysphagia. The webinar was then opened to the audience to ask both general questions to the entire panel and specific questions directed towards an individual panelist.
Moderator: Ms. Mary Spremulli, MA, CCC-SLP, is owner of Voice Aerobics, LLC, a Speech-Language Pathology Private Practice located in SW Florida. She holds a speech-language pathology license in Florida, Ohio, and North Carolina, and a nursing license in Florida. She is a faculty member of Parkinson Place in Sarasota, FL, and a member of the Education Committee of the World Parkinson Program. . Ms. Spremulli has been a Clinical Consultant with Passy-Muir, Inc. for over 20 years providing education to professionals and patients, and she has published articles on the topic of patient education. Since 2013, Ms. Spremulli has hosted a monthly podcast focusing on topics related to living well with Parkinson’s and other neurological diseases.
Panelist: Elisa Rudgers, mother of a child with dysphagia: My son’s name is Rydr Rudgers. He was diagnosed at 2 weeks old while in the NICU. He had his g-tube put in at 4 weeks old. His tube was removed in January 2014 (half-way through Kindergarten). Although he no longer requires a feeding tube, he is not able to eat & drink at an age appropriate level and requires a great deal of close supervision/monitoring when eating/drinking. Rydr continues to amaze all of us with the amount of time and effort he puts into learning/practicing how to eat and drink safely. His progress has been slow, but he keeps progressing!
Panelist: Jeff Mauerman, Oral cancer survivor with dysphagia, who, in January 2015, became the first patient in the United States to be implanted with the swallow expansion device (SED), which allows him to have manual control over the opening of his upper esophageal sphincter. Jeff is now consuming 100% of his hydration orally and is hopeful to eat solid foods in the future.
Panelist: Ed Steger, Head and Neck cancer survivor, was diagnosed with stage IV cancer in early 2005. He began with radiation treatment which was followed by six surgeries, eight different chemotherapy regimens and 4 serious local recurrences. Twice during the 2005/6 timeframe, he was given months to live and spent 2007/2008 in palliative care. The recurrences stopped in late 2007, a result of intense toxic chemotherapy; he has had no evidence of disease since then. A 12 hour salvage surgery in mid-2006 left him with a life time of severe dysphagia and a moderate speech impairment. He became the volunteer president of the National Foundation of Swallowing Disorders in late 2011.
Panelist: Sonia Blue, stroke survivor: As a result of a stroke and then surgical removal of a brain lesion in 2003, Sonia’s dysphagia left her tube-dependent for 6 ½ years. Traveling the country to pursue all available treatments to no avail, Sonia began working with Dr. Belafsky and Jan Pryor in 2005. With their help and her own efforts, her tube was removed and she began eating again in 2009.
Panelist: Norma Angus, wife and caregiver of Pete who was diagnosed with multisystem atrophy, which is classified as one of the Parkinson’s Plus syndromes. Pete experiences severe dysphagia and with Norma’s help, has remained aspiration free.