Losing the ability to speak is a harsh reality for people with ALS. It happens at different times for different people, depending on where the ALS symptoms appear and how fast the disease is progressing.
It’s also important to realize that preparing for loss of the ability to speak is psychologically and emotionally challenging, says Erika Sauer, a speech-language pathologist (SLP) of five years who participates in the Kessenich Family MDA/ALS Center clinic held at St. Catherine’s Rehabilitation Hospital in Miami.
The first step
When to see an SLP depends on your type of ALS onset. Sauer recommends that you see an SLP right away if you have bulbar-onset ALS, because the components of speech production — respiration, phonation [the process of uttering sound] and articulation — are usually affected first. Your breath support is “the battery that runs your voice” and controls the volume of your voice, while the motor production component of speech influences how you articulate.
|Colin Portnuff uses AAC devices to compensate for the loss of his voice.
Colin Portnuff of Tualatin, Ore., started working with an SLP soon after he was found to have bulbar-onset ALS in 2004. Portnuff, 55, who has two children, Cory, 24, and Lindsay, 18, with his wife, Laurie Farquhar, experienced speech difficulty as his first ALS symptom.
While reading up on speech production, he came across an article in the 2002 Journal of Medical Speech Language Pathology about how to use a person’s speaking rate as a warning sign for when to begin working with an SLP. According to the article, normal speaking rate is 190 words per minute; when your speaking rate slows to 125 words per minute, it’s time to see an SLP.
If your ALS starts in your extremities, it will probably take longer to affect your voice, and deciding when to see an SLP isn’t so straightforward. In that case, Sauer suggests seeing an SLP when your speech begins to “slow down/slur” and/or you’re having trouble being heard by others. The longer you wait, the more difficult it may become to communicate about your needs and desires. You also want to be able to continue to communicate effectively and efficiently in a variety of environments.
Your SLP will guide you through the rest of the steps to maintaining your communicative ability while your speech declines.
Although it’s not possible to reverse speech degeneration, your SLP can provide compensatory techniques to make your speech better understood.
“When we speak naturally in connected speech we combine and omit sounds,” Sauer says. “When motor production and breath support decline a patient can improve their speech intelligibility by slowing down their rate of speech production; speaking in small phrases with replenishing breaths instead of long sentences; and concentrating on accurately articulating all the sounds in a word.”
When degeneration of muscle coordination and strength make compensatory strategies ineffective, it’s time to start looking into augmentative and alternative communication (AAC) devices.
AAC devices flood the market. They range from low-tech options like communication boards and books to high-tech devices like the text-to-speech LightWRITER from Toby Churchill and the complex eye-tracking interface Eyegaze System from LC Technologies. Prices for AAC devices range from the hundreds to the thousands of dollars.
“A therapist who’s trained and knowledgeable in AAC devices is going to recommend a device that is going to grow with the patient,” Sauer says. “When you’re dealing with a progressive disease, you wouldn’t recommend a device that uses just typing and has no switch capability. What if they can’t use their hands anymore?”
Admitting the need for an AAC device is difficult, but Sauer warns you not to put it off. Getting an AAC device can be a challenge.
“There’s an evaluation process, ordering the equipment, programming and setting up the equipment, and that doesn’t necessarily take place within a week’s time,” she says. “So if you wait until you are moderately affected, and then you have to wait two or three months, you could possibly be severely affected and still not have your device.”
Portnuff began researching the various types of AAC devices in late 2005 and has since addressed symposia as well as published articles about AAC. He now uses a Toshiba Tecra M4 with two speech-generating applications, NextUp Talker and TextAloud.
“If you have bulbar-onset ALS, alternative access methods (other than typing) may not come into play for some time, but keep your options open, because it is hard to predict your eventual needs,” says Portnuff. “If you have limb-onset ALS, you may not be focused on speech issues, but do try to plan ahead.”
|As we were going to press we learned of the death of Colin Portnuff. We extend our condolences to his family and friends.
Advances in AAC technology allow some programs to use your prerecorded voice so that you can have your own voice playing on the speech-generating device.
Make sure that you’re ready for such a long and involved process. This can be an emotional task, says Sauer.
“I recently spoke with a patient who wanted to record her voice, but every time she sat down to do it or to write down those things that she wanted to say, it choked her up and disturbed her and she couldn’t do it,” she says.