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Swallowing. It’s such a simple thing for most to do. But swallowing can also be a scary maneuver, especially when it turns into an <a href="https://alsnewstoday.com/symptoms-of-als/">ALS symptom</a> called <a href="https://alsnewstoday.com/als-symptoms/difficulty-swallowing/">dysphagia</a>. I began experiencing it about four years after my initial <a href="https://alsnewstoday.com/als-diagnosis/">ALS diagnosis</a>. And because that was nine years ago, I’m sharing a few tips and the lessons I’ve learned within that time.
In my column “<a href="https://alsnewstoday.com/2018/07/17/als-hard-act-swallow-tips/">When ALS Becomes a Hard Act to Swallow</a>,&#8221; I describe my first days of dysphagia.  I wrote about calmly sipping coffee one morning till I suddenly felt the hot liquid traveling straight down into my lungs. Luckily, a few minutes of nasty gagging, coughing, and gasping for air saved me from having to dial up my local EMTs. A follow-up visit to my <a href="https://alsnewstoday.com/what-is-als/">ALS</a> clinic confirmed the diagnosis.
With my form of dysphagia, I can chew and swallow normal foods, but I have to add a powdered thickener to all my liquids.
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<h3>Too much powder</h3>
In restaurants, I used to feel embarrassed about having to drink a thickened beverage and invented various ways to blend in with other diners. One strategy was to order a cup of coffee and stir in the powder from a repurposed pill bottle that I carried in my purse. But I soon realized that the act of thickening my coffee at the table and drinking it with a straw drew way too many stares from diners.
To add to my frustration, the pill bottle once came open in my purse, coating everything inside with a yucky, sticky powder. It was obvious I needed a better way to prevent such an unfortunate incident, as well as strengthen my self-confidence.
Now, I follow the simple (and much more logical) method of bringing my premixed drink in a kid-size sports bottle with a built-in straw. The bottle is small and inconspicuous, and the restaurant staff doesn’t mind. I sit and sip with an air of confidence. Funny thing, when I looked around the room, I realized people were so self-absorbed in conversations or typing on their phones that no one was noticing me anyway.
<h3>Focus and strength</h3>
By far, one of the most important lessons I’ve learned from having dysphagia is the interconnectedness of our bodies. Let me explain.
Swallowing, for me, has become a maneuver best done with absolute focus and good posture. I’m careful to minimize distractions while eating, such as reading, watching TV, or having conversations. Conversations? Yes. I follow a personal rule of never talking while eating. Well, it’s not quite that severe; I make sure that I chew and swallow completely before answering someone’s question. It also helps that if the meal includes conversations, I take smaller bites of food or focus on the discussion entirely and <a href="https://alsnewstoday.com/columns/2017/06/13/als-and-dining-out-helpful-tips-on-how-to-prepare-in-advance/">take my leftovers home in a box</a>.
Practicing <a href="https://alsnewstoday.com/columns/sitting-too-much-3-tips/">good sitting posture</a> while eating and drinking helps prevent further swallowing issues. The best way to keep myself from slumping and slouching is to strengthen my back, neck, and abdominal muscles, which validates the <a href="https://alsnewstoday.com/columns/movement-exercise-daily/">morning and evening exercises</a> I do each day.
Finally, I’ve learned to adjust and adapt, and I&#8217;m always ready to move on to the next solution. Although our ALS symptoms may vary from one patient to another, we all share the same wish of finding the best way we can continue to live our lives. And I know we can learn to live well while we <a href="https://alsnewstoday.com/living-with-als/">live with ALS</a>.
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Lessons learned from the dysphagia symptoms that come with my ALS

Last week, I sat in the dentist’s chair filled with gratitude. I know. It’s bonkers. But I couldn’t help myself. I&#8217;m grateful knowing that if I have to <a href="https://alsnewstoday.com/living-with-als-2/">live with ALS</a>, it’s happening at a time when advances in technology and accommodations help me deal with its many challenges.
Not only am I living with a new normal, but many healthcare providers also have a new normal — one that I’m happily discovering helps them accommodate all kinds of patients’ needs.
Before I had <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, I always followed the recommended guidelines for annual exams, participated in my employer’s work-site wellness screens, and made sure my immunizations were up to date.
But the combination of my ALS and my age have whittled down my list of exams and screenings into something much shorter. Plus, I need accommodations.
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<h3>Pardon my neediness</h3>
Now, I have to arrive places either pushing a walker and <a href="https://alsandwellness.blogspot.com/2021/03/how-i-learned-to-like-my-afos.html">wearing ankle-foot orthoses</a> or needing extra turnaround room if I’m riding my mobility scooter. I used to be nervous that no one would understand my answers to important questions, as I have speech issues. And at the dentist, I&#8217;d worry that being unable to lean back in the chair because of breathing issues and being unable to tolerate water in my mouth due to <a href="https://alsnewstoday.com/columns/als-hard-act-swallow-tips/">swallowing issues</a> would impede the care I received.
During the past few years, however, I’ve learned that modern healthcare providers can accommodate just about everything.
My dentist tilts me back, but a nifty neck pillow keeps my throat upright. A stretchy plastic “shield” (called a dry shield) protects my throat from water, and I hold the suction tube so I can chase stray water droplets during the entire procedure. Instead of requiring multiple follow-up visits to replace a cracked crown, the procedure is completed in a single three-hour appointment. The new crown is created on-site via a 3D camera and a <a href="https://henryscheinequipmentcatalog.com/cad-cam/dental-mills?supplier_id=112&amp;utm_source=google&amp;utm_medium=CPC&amp;utm_campaign=Google|CPC|LP_CADCAM|CEREC-CADCAM-Logical-Position&amp;utm_content=RSA&amp;utm_term=CEREC-CADCAM-LogicalPosition&amp;gad=1&amp;gclid=Cj0KCQjwldKmBhCCARIsAP-0rfwe3rUmb5mSVjvoPHShheF2rUdD056eF5UMIXmym7A7mBI-Aga6Tn8aAr5TEALw_wcB" rel="nofollow">special milling machine</a>.
Every fall, I ride my mobility scooter right into my local pharmacy and get my flu and COVID-19 vaccines. I don’t even have to get off my scooter — the pharmacist comes to me. I even scooter in to see my dermatologist. Once in the exam room, I pivot the scooter’s seat, and it’s as if I’m seated in the exam room’s chair.
<h3>It&#8217;s a win-win</h3>
I’ll admit that living with ALS and coping with all its associated health needs can be challenging, especially when <a href="https://alsnewstoday.com/columns/my-als-prognosis-affects-how-i-wrestle-with-making-decisions/">wrestling with decisions</a> comparing the financial investment with our limited <a href="https://alsnewstoday.com/prognosis-of-als/">prognosis</a>. But thanks to advances in technology, <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>, and <a href="https://alsnewstoday.com/symptoms-of-als/">symptom management</a>, many ALS patients are experiencing a higher <a href="https://alsnewstoday.com/news/ninds-sets-new-priorities-als-research-improve-life-quality/">quality of life</a> over the course of their disease than in the past.
I believe that my commitment to maintaining my regular health screenings has contributed to my current good health, along with pausing to recognize and be grateful for the healthcare providers who’ve taken the extra step to accommodate my needs.
If you&#8217;re worried whether your local healthcare provider can accommodate your particular needs, just call ahead and discuss it with them. You just might be surprised to hear, “No problem. We can do that.”
Make taking care of your health beyond dealing with ALS symptoms a priority. It’s all part of learning to live well with ALS.
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Tag: swallowing

Lessons learned from the dysphagia symptoms that come with my ALS

How my dentist handles my speech, breathing, and swallowing issues