Technology Gives ALS Patients a Stronger Voice
If you have amyotrophic lateral sclerosis (ALS), you may understand too well how frustrating it can be to lose the ability to speak or communicate well. Although you can’t control the progression of the disorder, you do have the power to stay connected with others. Augmentative and alternative communication (AAC) offers you tools and strategies to participate in all life has to offer. Speech technology has revolutionized how people with ALS effectively communicate.
If Possible, Consider Communication Aids Early On
Communication aids can help people at all stages of the disorder. These aids include both low-tech and high-tech alternatives to speech. The best time to explore the use of a communication device is before you need one, so you have enough time to learn the equipment and make plans to purchase it. Take the time early on to explore your options and find the device that’s right for you. This way you’ll always have a way to communicate.
Speech devices are divided into two types: those with digitized speech sound like natural speech recordings and those with synthesized speech sound like computer-based speech. Some digitized communication devices can be programmed with your own voice. Recording your voice when it’s stronger and clearer will allow you to “speak” your loved ones’ names and common words or phrases in your own voice, rather than in a computerized voice down the line. This practice is referred to as “voice banking.”
A speech-language pathologist (SLP) who specializes in AAC can recommend a device that fits your specific needs and abilities. The specialist will conduct a full evaluation, identifying both your current and potential needs, as well as your strengths and limitations. He or she will also talk with you about what types of communication are important. For example, some devices not only improve speech communication, but can also allow you to talk on the telephone, connect to the Internet, type written documents, or control your environment, such as turning the lights on and off.
Based on your needs and abilities, the SLP will recommend a few devices. Before deciding on the final one, make sure to try them out in your daily activities and with your different communication partners.
Explore Your Options
There are countless AAC devices that can help improve communication. And some require no technology at all. In addition to old-fashioned pencil and paper, alphabet boards that include letters, words, or phrases can help in the give and take of speech.
If your speech is faint, a speech amplifier can help. This device can make your speech louder, allowing others to hear and understand you better. It can also preserve your speech by helping avoid muscle fatigue.
Many high-tech devices that can speak for you using synthesized or recorded speech are also available. Some are dedicated devices with the sole purpose of enhancing communication. Others are computerized devices that use special software and hardware connected to a home laptop computer. Many use keyboards that speak your typed messages.
If physical abilities limit your ability to type, many devices can be modified to include a switch. A switch allows users to scan through words or phrases and select their choice with a finger, foot pad, or even through a special camera just by looking at the word.
Regardless of which speech device you choose, it can improve your quality of conversation if those around you listen actively. To help, share these tips with your listeners:
Be patient. Conversation will be slower than you’re used to.
Look at me in the eyes when we talk. It makes it easier for you to understand me.
Don’t pretend you understand me when you don’t. Ask me to spell something that isn’t clear or choose another word.
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- Interview with Jeff Higginbotham, Ph.D., CCC/SLP, director of University at Buffalo's Signature Center for Excellence in Augmented Communication. Feb. 11, 2011.
- Muscular Dystrophy Association. http://www.als-mda.org/publications/alscare/ch4/)
- ALS Association of Greater New York. http://www.als-ny.org/index.php?page=ps_atcommover.php
- American Speech-Language-Hearing Association. http://www.asha.org/public/speech/disorders/ALSChallenge.htm
- Medscape. http://www.medscape.org/viewarticle/575966_4