We’ve all had that moment when a drink of water goes down the wrong pipe. You start coughing, struggle to catch your breath, and wonder how something so simple can cause so much trouble. Usually, it’s over in a minute or two, and you don’t think much about it afterward.
For me, it happens more often than I’d like, and it has for many years. For whatever reason, water is what gives me the most trouble.
Recently, I saw a question in an ataxia group asking whether others had difficulty swallowing. Several people shared their experiences, which made me think about how ataxia can affect swallowing, another everyday activity. We talk a lot about balance and walking, but ataxia involves more than that.
What It Looks Like for Me
Water is the only liquid that regularly makes me choke. While I need to drink all liquids slowly, water consistently causes problems. When it happens, I cough and recover.
Over the years, I’ve made a few adjustments. I usually use a water bottle with a smaller opening or a built-in straw, which helps me control how much I drink at once. With any drink, I take smaller, slower sips. It’s a simple change, but it’s become part of how I drink water.
I’ve discussed swallowing with my speech therapist, who has mentioned thickening products as a possible option. I haven’t used them or had a swallow test. For now, I’ve been managing by slowing down and paying attention to how much I drink at once, and so far I’m okay. As I progress, I may need to try one. That doesn’t mean I consider choking harmless. Swallowing difficulties can be serious, and because my ataxia is progressive, I understand that the adjustments I use today may not always be enough.
How Ataxia Can Affect Swallowing
Ataxia affects coordination throughout the body, including the muscles involved in speaking and swallowing. When we swallow, several muscles must work together to move food or liquid toward the stomach while keeping it out of the airway. Most of us never think about that process until something goes wrong. According to the National Ataxia Foundation, ataxia can disrupt the muscle control needed to swallow, and poor coordination between breathing and swallowing raises the risk of choking.
The medical term for swallowing difficulties is dysphagia. The foundation lists signs that may include coughing or choking while eating, drinking, or taking pills; food or pills sticking in the throat; or needing to concentrate to keep food from going down the wrong way. Its swallowing strategies guide also notes that fatigue and distractions can make things worse.
What Can Help with Swallowing Difficulties?
Because swallowing problems vary, there’s no one-size-fits-all approach. The National Ataxia Foundation outlines strategies such as taking smaller sips, using specialized drinking cups, reducing distractions, and adjusting liquid consistency. Some people benefit from thickened liquids or specific swallowing techniques, while others may need a different approach. A straw helps some people but not others, and posture changes should be tried only with a speech therapist’s guidance. That’s why it’s important to discuss swallowing difficulties with a qualified healthcare professional rather than assume a particular technique is safe for everyone.
Research on swallowing treatments for hereditary ataxia is limited. A Cochrane review found no qualifying randomized controlled trials in the literature available through 2015. That doesn’t mean treatments can’t help, but it does highlight how much we still need to learn. For me, taking smaller sips and drinking slowly have become everyday habits. I’m not recommending these techniques to others, but I’m sharing adjustments I’ve made based on my own experience.
When to Bring It Up with Your Doctor.
Swallowing problems are worth paying attention to. When food or liquid goes down the wrong way, it can enter the airway and sometimes the lungs, which the foundation says can lead to aspiration pneumonia. If you’re having trouble swallowing or frequently choke, talk to your doctor or speech therapist, who can evaluate your swallowing and help you understand whether you should do anything differently.
Not everyone with ataxia has swallowing problems, and even those who do may have very different experiences. Some deal with it occasionally, while others have more difficulty. Just because you’ve learned to live with it doesn’t mean you should overlook it.
Living With Another Everyday Adjustment
I’ve lived with ataxia my entire life, and over the years, I’ve had to adjust how I approach many everyday activities. Some adjustments have taken considerable effort, while others have been easy to incorporate into my routine. I’ve written before about how ataxia can slow the pace of everyday life in Living in Slow Motion. Drinking water is another example of how even the simplest activities can require a little more thought, and it’s something I’ll keep paying attention to.
Keep the Conversation Going
Do you experience swallowing difficulties with ataxia? Do they occur with water, other liquids, or food? Feel free to share your experience in the comments. It’s worth discussing, especially since many of us may be dealing with different versions of the same challenge. If you’d like more articles about living with ataxia and navigating life’s challenges, join the blog community.
As I mentioned, I’ve adapted to drinking water by using a water bottle with a smaller opening or a built-in straw. One bottle I use is the Fuel the Journey CamelBak Water Bottle, which is also available through my InspireThread shop. A portion of every sale supports rare disease research. It’s simply what works for me, not a medical recommendation. If you’re experiencing swallowing difficulties, talk with your healthcare professional about what’s appropriate for you.
