I’m often reminded of a family who attended the support group I facilitated for the Muscular Dystrophy Association. Nina, whose husband, Richard, had myotonic dystrophy, told us that strangers often thought Richard was drunk because of his unusual gait and slurred speech. This story resonates with me because I now have those symptoms and often wonder, How am I perceived?

My weak muscles and fatigue affect the quality and strength of my voice. Several years ago, I realized I could no longer project my voice, so I stopped teaching and making presentations. When I occasionally do take on this challenge, I use a $40 voice amplifier I bought online. It’s a good tool for speaking to a small group of people if no microphone or amplification system is available.

But speaking to someone in a crowded and noisy environment is impossible. Even if my spouse tells me I can be heard, I still feel exhausted speaking among so much auditory competition. It’s particularly difficult when I’m socializing with an older friend who has trouble hearing. I think to myself, Let’s just take this conversation online where my fingers still work, and your eyes can decipher my words.

Last year I had a bout of the flu that left me exhausted for weeks. My nasal passages were so congested I relied on my mouth to breathe. I often couldn’t speak and breathe at the same time. To communicate with my spouse, I used my smartphone’s text-to-speech feature. Although time-consuming, it was helpful.

Back in my support group days I met people with ALS or other neuromuscular disorders who couldn’t speak. Many of them used assistive devices operated by their fingers or eyes. I’m sure technology has advanced, and these devices are now easier to use and have greater functionality, but I’m not there yet.

When a friend of mine was diagnosed with spasmodic dysphonia, a neurologic condition that causes the voice box muscles to contract and spasm involuntarily, she could barely speak. Her voice was faint and scratchy. For treatment she has tried Botox injections, which she said were temporarily helpful.

For myotonic dystrophy, myotonia—the muscle’s inability to relax—can affect any muscle. My neurologist suggested I move my jaw and tongue around before starting a meal. It’s like a warm-up stretch to get the muscles activated. This helps in the morning because after a few hours of being awake, my speech tends to improve. But it doesn’t help in the evening, when my muscles are tired.

For now, I try my best to sleep and eat well, hydrate, exercise, and plan my day to maximize my strengths. I don’t speak on the phone in the morning. And I always prefer to communicate online. The National Institute on Deafness and other Communication Disorders has a list of suggestions for taking care of your voice.

The biggest frustration is having to repeat myself—whether because people don’t hear me clearly or they haven’t perfected the fine art of listening. With friends and loved ones, I now say, “Listen…I will only say this once.”

Leslie Krongold, EdD, lives in Alameda, CA, where she leads support group meetings for the Myotonic Dystrophy Foundation. She also writes a blog and produces a podcast series called Glass Half Full.