ALS Alert Newsletter | December 2010

High-Tech Helper

How one speech pathologist accentuates the positive.

ALS patients don’t see Angela Strauch very often, but her services provide a lifeline.

Strauch is at hand at the Johns Hopkins ALS clinic she’s involved with only one Tuesday a month, and, as a licensed speech pathologist, she’s able to counsel people with early difficulties in talking. “Some of the advice I offer, like slow your speaking, enunciate more, conserve your energy, don’t try to talk over room noise is pretty well intuitive,” she says.

But where Strauch comes into her own is in the next phase of this illness, when ALS sends people to augmentative and alternative communication (ACC) devices. Working with Kelly Casey, the Hopkins service’s occupational therapist, Strauch routinely recommends ways to maximize language ability for patients.

It was Casey’s idea to set up the monthly ALS Assistive Technology clinic. Her monitoring each patient’s readiness for aids and Strauch’s familiarity with the technology make the clinic valuable. As much as anyone can, Strauch tailors patient approaches—from simple word-boards to programmable systems that synthesize speech and access the Internet. Her goal is to ease the transition from one way of communicating to another as the disease progresses.

Descriptions of the technology are found many places online, such as the MDA's ALS Division website. But there’s no substitute for working with a professional in the field. Strauch is licensed and has a graduate degree from Loyola University in Baltimore.

She interned at the Maryland State Workforce and Technology Center, the state’s main rehab agency, and has been an active speech pathologist in the Baltimore area for 15 years. Here Strauch offers a few insights:

ALERT: We could see where patients would want to put off getting assisted speech as long as possible.

STRAUCH: Actually, the opposite is true. Most patients long to communicate more easily. And we encourage them to become familiar with the technology early-on. Not long ago, we had a man with some speech difficulty but, mostly, he couldn’t use his limbs. He asked to be on an eye gaze-based computer system before he really needed it to communicate. Then he could access his email and computer programs by eye and got very skilled at it. A year later, when he really needed the technique, he had no transition period.

ALERT: Sometimes patients and you differ on the system you think they should use?

STRAUCH: Well, people new to ACC often think that they’d do well with voice banking—you pre-record words and phrases, for a playback device, that you think you might need when they no longer come easily. But voice banking is limited. There’s no easy way to create spontaneous speech.

ALERT: What do you tell patients ordering their first device?

STRAUCH: That they have to get something that progresses with the disease. Insurance will only pay for one machine every five years, so they want to be sure to build in flexibility. Order something with switch access or eye gaze ability even though you can still press keys.

We often suggest that people make use of the loaner closets that ALSA and the MDA operate. That way they can try something out while speech is still easy, then switch to insurance for the major device.

ALERT: Is there anything new?

STRAUCH: The hot ticket item just now is the iPad. People like it because it doesn’t make them look different. The app they order is “proloquo2go,” which lets them type and transmit speech or select icons or program their own phrases. I don’t love the fact that it doesn’t have switch access for when you can’t press the screen, but it’s a cool alternate to lower tech devices.

Also, eye-gaze devices are continuing to improve fast. Every year makes a difference.