Aspiration can be one of the most terrifying – and deadly – complications of Huntington’s disease. For many of us, our ability to swallow is something we never think about… until the ability starts to disappear.

Today, Sarah Foster shares what it feels like when abilities we’ve relied on since birth begin to fade.

I've written about Huntington’s disease and behavioral and psychiatric issues, trouble speaking, memory loss, and the onset of problems with movement. You could say – and I would agree – that my least written-about topic is aspiration.

There's one reason I've put off talking about it in this space and in my own head: It scares me.

Thankfully, fear-based denial has stripped away, and here we are.

Swallowing is an innate reflex we’re born with. Losing that ability is terrifying.

Huntington's disease slowly and systematically destroys the ability to swallow. Gradually, more food, water, everything else goes down the wrong pipe – the windpipe.

The worst-case scenario may require me to use suppositories, eat baby food, or maybe use a feeding tube. These worst-case scenarios used to feel like they were decades away, if they ever happened at all. But now they're creeping closer.

As an integral part of my plumbing, swallowing never used to impress me that much. But now, with its deterioration, the swallow mechanism proves its value as a precise exercise of coordination and skill.

The deterioration of my swallowing ability creates an environment ripe for aspiration.

What is aspiration?

Aspiration is when something enters the lungs that doesn't belong there. It can quickly fester and cause aspiration pneumonia. In fact, pneumonia is one of the leading causes of death for people with Huntington's disease.

The ability to swallow is innate from birth as a perfectly synchronized process, guided by signals I’ve never consciously known. My damaged brain disrupts this natural balance in my body, making it hard for me to swallow and causing a disturbing stillness in my throat.

Like other Huntington's disease (HD) symptoms that have slowly manifested, difficulty swallowing emerged as a shy wallflower of a symptom. It started, maybe, with the odd pill feeling stuck. Noticeable, but nothing to panic about.

Gone. Almost forgotten.

Until…

My tongue doesn't move food around in my mouth the way it should. I spit out my mouthful, or it gets stuck in my throat. My husband uses the Heimlich maneuver on me and pounds my back until I can say aloud, "I'm OK."

Problems ingesting pill-shaped items became more difficult.

Swallow studies: they’re not for birds

What I feared would be major surgery was instead a laid-back experience. In fact, I didn't even have to lie back.

My husband, Randy, watched me stand in front of an X-ray machine, swallowing different thicknesses of fluid along with food. I also swallowed a generous helping of chalky barium, which made it easy to see what was going on. By making hidden, internal problems visible, these studies enable speech pathologists to clarify what’s going on.

My first swallow study revealed that nothing was stuck in my throat. What I felt was actually a referred sensation from the end of my esophagus. It had become inflexible and could only signal this discomfort in a way I recognized. What I perceived as a blockage was actually my body’s way of signaling distress from an area that was no longer functioning as it should.

I was diagnosed with oropharyngeal dysphagia

Twice now, that referred sensation has led a gastroenterologist to stretch my esophagus, which has made it easier for it to function.

Sometimes, Randy breaks up pill-shaped items or coats them in olive oil to help me wash them down with water or yogurt. We use gummy and liquid formulations whenever possible.

Soft foods that can be moistened or "thinned" with liquids – like French toast sticks dipped in fruit compote – go down OK.

Sometimes, a poorly chewed mouthful of food seems like too much work, and I spit it out on my plate.

I recently had another barium swallow study done to compare with all the normal baseline studies I've taken over the years.

The good news is that I am not aspirating any substances yet. That's a nicer way of saying that large pieces of food, mucus, and saliva aren't accumulating in my lungs and creating a fertile environment for aspiration pneumonia – one of the most dangerous threats to people with HD.

The bad, but unsurprising, news is that I have mild malfunctioning in my mouth and pharynx, called oropharyngeal dysphagia. The speech pathologist showed me what looked like a leaky gasket. The pharynx is the area behind the nose and mouth that connects to the esophagus. The esophagus is the tube that carries food from the pharynx to the stomach.

And we all know what a stomach is.

My tongue isn’t working the way it should

Oropharyngeal dysphagia can be mild, moderate, or severe and severity may be measured using a few different scales. When the condition is moderate or severe, there is a higher risk of aspiration occurring.

As swallowing takes the center stage, it feels like food and other small items are getting stuck on the way down. Plain old water is even worse because I cough it up. Water is a thin liquid, so it moves quickly in my mouth and throat. With dysphagia, the rapid flow of water in my mouth is harder to control than with a thicker liquid, so it has a higher risk of entering my airway, which leads to coughing.

Soon after the barium swallow study, I went to a well-timed follow-up appointment at the HDSA Center of Excellence at Duke University Medical Center. I went to the clinic at Duke Hospital to meet with specialists who treat Huntington's disease. These specialists include neurologists, physical therapists, occupational therapists, social workers, and speech therapists.

When reviewing my latest swallow study, the speech therapist explained that with HD, dysphagia typically affects the oropharyngeal area shown. In my case, the back of my tongue wasn’t always creating a proper seal during swallowing, something it normally should.

Luckily, the Duke speech therapist knows the exact exercises to strengthen the back of my tongue and can teach them during video appointments.

Dysphasia diet

Swallowing is now on my top shelf of problems, and no innate instinct or common sense is around to tell me what I should eat. Fortunately, a dysphasia diet exists to guide people with progressive dysphasia. Several resources like menus, recipes, advice, and categorizations of food textures are available to help me out.

So, I am gravitating towards softer foods, avoiding meat, and choosing cooked and canned vegetables and fruits.

I eat a small bite, masticate, have a sip of water, chew again, and swallow.

What used to happen automatically now requires me to think before I can initiate it. Sometimes, the swallow mechanism goes on strike, and I spit out what I am eating.

It's part of the broader dysregulation of body processes in Huntington's disease.

My very best defense, say the dentist, speech therapist, and neurologist, is good oral hygiene and having a very clean mouth.

I brush several times a day and rinse after eating or drinking anything. I use floss picks and use an oral spray to keep my mouth moist. I avoid anything with meat, raw vegetables, and too much sugar.

I often think about relatives who lived with HD

Sometimes, I ruminate about "Childhood Me" and how happily ignorant I was about my future.

I had a grandmother with HD – Baboo. I remember how she ate her hamburger, chewing while moving her head up and down and side to side. The sight spawned nearly unstoppable silly giggles from me.

But after a few of these incidents, my grandfather, Hunt, said, "Don't, Sug."

Although he’d used a familiar term of endearment, an unfamiliar tremble had entered Hunt's voice. This tremble would worsen as he lost his wife of sixty years, Baboo, in a frightening, unfamiliar way.

I never laughed at her again.

I often wish that I could go back in time and be nicer to Baboo. I want this more and more as her strange and silent condition now looks like a direct foreshadowing of my own.

I am closer to Baboo's age each day and am already silent and strange.

That's old enough to have learned full well that do-overs don't exist. Life is a one-way trip.

I only have control of today.

An old-timer from AA liked to say, "You make your choices, and your choices make you," and he is so on point.

Flipping denial into determination

Not being able to predict which doors are closing in my life or when they will slam shut leaves a bitter aftertaste.

I used to be in denial about my onset of HD-related communication and speech issues.

Nowadays, I fear waking up with a fever that signifies aspiration pneumonia. Whenever I suspect anything, I get a chest X-ray to be sure.

But, if I've indeed reached a point where poor choices are going to kill me, then the opposite must also be true.

I'll have a protein shake for breakfast. I'll floss and schedule extra dental cleanings. Aspiration has been added to the list of deadly symptoms that require constant self-monitoring, like falling.

Then I hope for a ripple effect that brings with it more good habits that'll keep me safe.

I continue to eat soft food. I know, one day, that even chewing soft food will be impossible.

But you know what?

I am completely unafraid of a feeding tube.

The information presented is solely for educational purposes, not as specific advice for the evaluation, management, or treatment of any condition.

The individual(s) who have written and created the content and whose images appear in this article have been paid by Teva Pharmaceuticals for their contributions. This content represents the opinions of the contributor and does not necessarily reflect those of Teva Pharmaceuticals. Similarly, Teva Pharmaceuticals does not review, control, influence, or endorse any content related to the contributor’s websites or social media networks. This content is intended for informational and educational purposes and should not be considered medical advice or recommendations. Consult a qualified medical professional for diagnosis and before beginning or changing any treatment regimen.

NPS-ALL-NP-01687 JANUARY 2026