Having a mouthful of spit, When you can’t get rid of it, Isn’t very nice, You have to cough and spit more than twice, It often makes you choke, That’s certainly not a joke, I dream of not having to always spit, & use a tissue to get rid of it, It’s very unpleasant, Because it makes me pant, It’s also quite distressing, Not being able to eat or swallow anything, Who knew that this would happen to me! It’s an affliction that you cannot see, It’s super frustrating not being able to eat anything not even a vegetable, People often point and stare, which makes me feel rather uncomfortable, Try not to stare, Or glare, At me, It makes me go off my tree, And a little bit crazy, So, try not to be offended, About what’s going on in my head, Simply look the other way, & that will make my day, Dysphagia is definitely not contagious, So, why all the fuss????
My name is Nerida Kingsford. I live in Brisbane Australia. I had a left sided stroke during a 17 hour operation for a huge benign brain tumour in May 2017. Unfortunately, the stroke affected my ability to swallow and eat. Consequently, I have a PEG (Percutaneous Enteral Gastronomy) for my nutritional needs. I have had 25 brain surgeries due to additional benign cysts that developed in my brain. I’m am also reliant on a manual wheelchair for all of my mobility. I enjoy tasting food, despite not being able to swallow. I also enjoy painting and drawing and writing poetry. I enjoy socialising with my family and friends.
This article was originally published by NYU Langone Health NewsHub on June 26, 2025. Permission to re-share this article was granted by Robin Meeks and Lacy Scarmana. To view the original publication: click here. The NFOSD appreciates the permission to share this story of hope for those impacted by swallowing disorders.
For more than 10 years, Robin Meeks, a 56-year-old artist from the Bronx, lived on a mostly liquid diet. A condition called dysphagia made it nearly impossible for her to swallow solid food without discomfort or choking.
“I had to puree all my food,” Meeks recalled. “I would buy chicken, vegetables, but have to put them in the blender. Or I drank liquid meal replacements. I basically ate the same thing all day, every day, for a decade.”
Doctors at other medical centers repeatedly told her that the condition was permanent, and there was nothing to be done.
“I was extremely frustrated,” said her daughter, Sade, an EMT. “Doctors would say that unless her weight dropped beyond a certain point and she needed a feeding tube, they couldn’t help. But I didn’t want to wait for things to get that bad. Living on a liquid diet alone wasn’t nutritious for her, and she had already lost almost half her body weight.”
“Swallowing disorders don’t really have a solid home in medicine,” said Dr. Amin. “They can be managed by a variety of specialties, including gastroenterology, otolaryngology, radiology, and rehabilitation medicine. Oftentimes, patients get bounced around without a clear path forward. In Robin’s case, she had severe narrowing at the top of the esophagus caused by membranous scarring or webbing. That’s a problem many physicians are hesitant to treat.”
Robin Meeks in front of a mural she painted at a school in the Bronx. Photo Credit: Jennifer Caves
The Voice Center, which marks its 20th anniversary this year, offers comprehensive evaluation, diagnosis, imaging, and treatment for a wide range of complex conditions affecting the sound and quality of the voice and swallowing; these include cricopharyngeal bar; Zenker’s diverticulum; vocal cord nodules, polyps, and paralysis; and complex cases of dysphagia like Meek’s. The team brings together laryngologists, speech–language pathologists, and other experts to provide care unavailable elsewhere in the region.
After a thorough evaluation, Meeks underwent a rigid esophagoscopy with balloon dilation in December, a procedure designed to both visualize and treat the affected area.
“Using rigid instruments, we were able to get a better view of the upper esophagus, which is an area that’s hard to examine with flexible scopes,” said Dr. Amin. “We saw that she had multiple scar bands. We made precise incisions to release the scar bands and then used a balloon to gently dilate the area.”
The goal was to restore the natural opening of the esophagus while minimizing the risk of perforation and other complications. The procedure was a success.
“The first thing I wanted to eat was lasagna,” Meeks said. “I asked my daughter to make it. I love pasta. I almost ate the whole pan—I was just so excited.”
This summer, she is most looking forward to eating fresh fruits and vegetables without having to blend them.
“To see my mom eat again is incredible,” said Sade. “I was a little skeptical at first, because Dr. Amin was the first doctor in 10 years to say ‘This procedure is done on a regular basis, and we can help.’ But now we go out to eat, and I cook for her. I have no problem making whatever request she has. It’s amazing to see my daughter, who is four now, eat together for the first time with her grandma. It is beautiful.”
The NFOSD Sound Bytes mini-podcast series focuses on the experiences of patients and caregivers living with dysphagia. Each episode provides personal insights and stories, highlighting the challenges and strategies involved in managing this condition. The series aims to raise awareness, offer support, and share practical advice from those directly affected by dysphagia.
