Last week, I had the opportunity to attend a fun, social, gala event. Even though the occasion was filled with presentations and entertaining activities, my best take-home memory came from the special moment I shared with another attendee.
It happened during a short lull in the program. Presentations had just concluded and we were waiting for the signal that our luncheon room was ready. Everyone around me took advantage of the break to stand up, move about, and chat. For a while, I tried to force my weak voice to rise over the noise in the room but soon gave up. I sat alone watching and smiling.
Soon a woman sat down beside me. Smiling, she offered me a small white card. The card said in effect, I have dysphonia … it affects my ability to speak. Please listen carefully. Thank you. She gestured toward her throat.
Immediately, I pointed to my own throat while smiling broadly.
Noting that the woman didn’t quite understand my unexpected enthusiastic reaction to her card, I held up one finger to signal, wait! Then I reached down, dug into my scooter’s side bag and pulled out my Boogie Board!
Now I had her completely stymied, and from her facial expression, I surmised she hadn’t seen a Boogie Board before. But she quickly understood the value of the board when I wrote, “I have dysarthria. I can’t talk, either!” Adding a hand-drawn smiley-face.
Time seemed to stand still as we sat in the middle of the noisy hubbub while writing questions and answers back and forth. I learned that she had been a teacher in northern California, but had to give it up after a surgery failed to correct spasms in her vocal chords. She knew I had ALS, but not that it could affect the ability to speak and cause dysarthria.
With the sound of the bell signaling lunch was on, our lively, scribbling conversation came to an end. But not before we exchanged email addresses and a promise from me that I would send information on how she could get a Boogie Board of her own!
Later that day, it struck me how even though we had totally different reasons for our voice-challenged conditions, we shared the same need to converse with others. I wondered how often innovations and assistive devices are well-known and used within one patient population and not by other populations who could also benefit.
I’m grateful I had this opportunity to share a unique solution with someone who shares my health challenges.
And I made a new friend as well!
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, 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 Services, and are intended to spark discussion about issues pertaining to ALS.
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