From the Clinic

Pat Ourand is a speech-language pathologist who’s worked with ALS patients for nearly 16 years. She has a master’s degree in speech pathology and a second, more recent one in rehabilitation technology from Johns Hopkins. Ourand is president-elect of the U.S. Society of Augmentative and Alternative Communication.

Tell us how speech can be affected by ALS, and when.

I’d like to do that, but the truth is that ALS is unpredictable, speech-wise. There’s no set pattern, save for a predictable decline after speech slows to about half normal rate.

So you like to see patients after they’re first diagnosed with ALS?

Yes. It’s better to be aware of what could happen because then you, the patient, get to decide how you’ll continue communicating. And you decide when you do it.

And then what?

I ask patients to be quick to report change. Of course, many already notice differences in their speaking by the time they’re diagnosed. Then we talk strategies. But others have no signs.

The down side of asking patients to be alert to slowing speech or to a gravelly vocal quality or drop in volume is, of course, that you’re acknowledging another loss in a disease where the robbery is ongoing. But I emphasize: people can still communicate. And it’s much better to have a smooth transition to new ways of doing that. Don’t wait until you have trouble ordering a pizza on the phone.

What early strategies do you use?

You tell people it’s critical to save energy for communication. Schedule important meetings in the morning when energy is highest, rather than in the afternoon. Use a cane if walking drains your energy. If it takes hours to finish a meal, talking afterward may be difficult. So that day you choose foods easier to eat. Singers’ strategies are helpful too: Don’t talk over loud noises. Don’t yell at ball games or at your kids. (Even if they have it coming.) Keep well hydrated. Keep rested.

And later?

Some patients prefer the low-tech approach. They use traditional letter, word or picture boards. Some people I know use Morse code.

And the high-tech approach?

You can digitize your natural speech if you record it beforehand, then play it back as you need. Others prefer computer-generated speech—the text you type changes to synthesized words. If muscle use is limited, opt for a switch that scans a keyboard on a computer monitor. Just be sure you learn to use devices before you need them! Why give ALS a wider opening into your life?

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