When ALS Silences a Voice, Low-Tech Communication Offers Many Advantages

by Margaret Cotts and Craig Phillips on Thu, 2013-08-01 09:30

AAC specialist describes practical low-tech strategies that are part of a complete communication system for people with ALS and their loved ones

Jim, who has ALS, focuses his laser pointer on the heart that appears on a large letter/vocabulary chart that he uses to communicate. He sent this photo to his friend, Craig, one of the authors.
Article Highlights:
  • When people with ALS lose their ability to speak, they generally incorporate both high-tech and low-tech strategies into their communication system.
  • One man's quest to help his friend with ALS communicate better led him to assistive technology specialist Margaret Cotts, who shared her extensive experience with low-tech strategies.
  • In certain situations, low-tech communication strategies are preferable to high-tech methods, so it's wise to have an effective system in place when needed.

My name is Craig, and I would like to share a story that may help many people who struggle to communicate.

The first part of this article is about my personal experience helping an old friend who has ALS. The second part is information from Margaret Cotts, an assistive technology specialist with extensive experience in helping people with ALS communicate if they have lost the ability to speak.

Craig’s story

A few months ago, my sister in Pennsylvania called to share that her ex-husband, Jim, recently had been diagnosed with ALS. His condition had advanced quite rapidly, and he had been relocated to a long-term care facility about a mile from my home in Baltimore. My sister knew I had always liked Jim and asked if I’d like to see him.

In my mind there were only two choices. Say no — or make a commitment to visit Jim until one of our lives concluded. I knew it was bound to put me through some emotional exercises. But there really was no choice. An opportunity to love and learn had been laid at my feet. It was good timing and good fortune for us both.

So after sleeping on the idea, I told my life partner Sue (a psychiatrist), “I’ve decided to visit Jim. This is going to be VERY difficult.” To which she replied, “So, you’ve already determined that have you?” Darn! She got me. “OOOO-K ... ” I said, as I struggled to revise my thought process. I exclaimed, “I’ve decided to visit Jim! This is going to be wonderful!”

And it has been.

Jim has a trach and is on a ventilator. He can form words and letters, but with no sound. He still has wonderful facial expressions and can shake his head a little. That’s it. His devoted wife, Peggy, attends to him.

It was great to see his bright-eyed smiling face again! I started to share my lifetime of experiences. But Jim’s only way to communicate was a piece of paper with rows of letters on it. I was rather angry that this well-respected facility had nothing better for him — and then I learned that Peggy had made up the chart herself. The facility had nothing to help!

I found the sheet terribly difficult to use, and it was driving me/us crazy. There had to be a better way! I researched and found some amazing computerized systems. But they were expensive and difficult to find for loan. Then I had the idea that if I took a small laser pointer and attached it to a pair of glasses, and then put up a larger letter chart, it might just work! I searched the Internet and found nothing. So I went on eBay and started to put pieces together. But before I hit the “buy” button, I tried one more Internet search, on YouTube this time.

Lo and behold, I found someone with the same idea! She, Margaret Cotts, had enhanced the design, and started a small “garage” business, providing this solution and a number of others. She calls her company Low Tech Solutions.

I called Margaret and bought a laser and chart for about $160. Jim doesn’t wear glasses, so I went to a 3-D movie and brought the glasses home. I popped the lenses out and took everything to Jim. Within five minutes we were communicating three times faster than before, with no stress!

After that wonderful experience, my frustration shifted: Why don’t people know about this? Thousands suffer in silence when they could be communicating for a small amount of money.

And that led me to two wonderful ladies who work for the local chapter of MDA. They told me about the MDA/ALS Newsmagazine, and you are reading the result.

Now, I'll turn this over to Margaret Cotts to tell you more about low-tech communication for people with ALS.

What is AAC?

Low Tech Communication Board
Using an AlphaCore low-tech communication board
Dr. Richard Olney and his wife, Paula
Dr. Richard Olney, a renowned ALS researcher, lived with ALS for eight years before losing his battle to the disease in 2012. He's pictured here with his wife, Paula, and his vocabulary board.
AlphaCore communication board
Pointing to a low tech communication board
Pointing to a low-tech communication board
Using a laser pointer to point to a communication board
Using a laser pointer to point to a communication board

When a person has difficulty communicating with speech, there are different ways to help that person communicate. Augmentative, alternative communication (AAC) is the term used to describe these methods. AAC can be high tech (computerized) or low tech (simple).

Low-tech communication systems don’t contain a computer chip, and usually don't have a power source. A low-tech system can be handmade at relatively low cost. Most of the materials can be easily obtained at an office supply store.

Examples of low-tech communication include writing, gestures, pointing to letters and words on a communication board, sign language, eye pointing (looking at a desired object), using a head-mounted laser pointer to point to a communication board, and scanning.

AAC includes both low- and high-tech options

If a person has a high-tech communication device, isn’t that better than using a paper board?

The reality is that it is not either/or. Many people with ALS use a variety of both high- and low-tech strategies in order to communicate effectively. Low tech is just one part of a complete AAC system.

There are a number of reasons why people with ALS and their caregivers would want functional low-tech communication strategies in place: as a backup to high tech, as a supplement to speech, in specific situations, and for speed and simplicity.

Low tech as a backup to high tech: Backup is needed for those times when a communication device is sent to the shop for repairs, or when the power goes out. A low-tech paper communication board will not run out of power, can’t get a computer virus and its “screen” won't break if you drop it.

Low tech to supplement existing speech: Most people with a progressive communication disability continue to use speech for as long as possible, relying on low-tech and no-tech strategies only when their speech is not understood. Examples of supplemental speech strategies include repeating or verbally spelling out a misunderstood word, pointing to a communication board to spell out a word, and pointing to the first letter of each word while speaking it.

Low tech for certain locations and situations: There are certain situations where it might not be feasible or efficient to use a high-tech communication device (e.g., while in the bath tub, at bedtime or while driving).

The following is an example of low-tech strategies being used at bedtime.

Doug is a minister with ALS. He has lost the ability to speak, and has very little movement below his neck. Doug uses a special head-operated mouse that enables him to access his AAC device. Doug spends a good deal of each day on his communication device, writing emails, working on his autobiography and performing ministry outreach.

At night, Doug’s wife, Ronnie, helps him get into bed. She takes the communication device off his power chair, and uses a mechanical lift to help him get into bed. Ronnie makes sure that Doug can reach his switch-adapted call button, which he activates with head movement. Doug is tucked in and comfy.

At 3 a.m., Doug activates his call button. There is clearly something wrong.

Ronnie uses a strategy of intelligent guessing, starting with the most common things that Doug requests.

She asks: “Arms?” (i.e., Do you want me to re-position your arms?)

Doug signals “no.”

“Do you want me to bend your legs?” “No.”

“Does it have to do with your body?” “Yes.”

“Is it your positioning?” “No.”

Doug looks down at his legs. “Is it your legs?” “Yes.”

Ronnie peels back the blanket and looks at Doug’s legs.

“Are you having a cramp?” “No.”

Doug blinks two hard blinks, which is a signal that he and Ronnie have developed that means, “Let’s stop guessing and try spelling it out.”

Ronnie starts verbally scanning through the sections of the alphabet, using a strategy called partner-assisted scanning. Doug nods when she calls out the letter he wants. Within 15 seconds, Doug has spelled out the word “bug.” Ronnie pulls up Doug’s pajama legs, and sure enough, there is a lady bug crawling up Doug’s leg. The whole process takes less than a minute.

Theoretically, Ronnie could have put Doug back in his wheelchair, put the communication device back on the chair, turned on the communication device and allowed it to power up. But this would have taken about 15 minutes. In this situation, using a low-tech strategy was faster and more efficient.

In fact, Ronnie and Doug used a number of different low-tech strategies:

  • Doug used his call button to get Ronnie’s attention.
  • Ronnie took some intelligent guesses.
  • Doug used eyegaze (looking down at his leg) to direct Ronnie to look there.
  • Doug used a gesture (blinking twice) to signify “Let’s spell it out.”
  • Doug and Ronnie used partner-assisted scanning to spell out the word.

Low tech for reasons of speed and efficiency: For some people, low tech may be a faster way to communicate. There are some people who don’t have enough head movement to use a head mouse but who can use a head-mounted laser pointer in conjunction with a core vocabulary communication board. (“Core vocabulary” words are the most frequently used words in the English language, making up about 85 percent of our day-to-day speech.)

This is not to imply that low tech is always faster. Some people may be faster using their high-tech communication system. Different systems are better for different uses.

For example, Jason is a sophisticated computer user. He spends a good part of every day working on email and updating his blog. His high-tech system includes an eyegaze computer that allows him to type using his eyes. He uses this computer for some of his email, working on his blog and reading out loud to his 3-year-old daughter.

Although Jason sometimes uses the eyegaze system for face-to-face communication, his primary communication system for day-to-day conversations is low tech. He uses an adapted laser attached to his eyeglasses to point to letters and words on a large (24-by-36-inch) core vocabulary board. Jason is extremely proficient with the laser and board. A conversation with him takes place at almost a conversational speed. Jason also uses his laser and communication board to work on email and his blog. He points to the letters and words, and his communication partner types what he is pointing to.

If Jason can independently communicate using his eyegaze device, why wouldn’t he do that? The answer is twofold.

Speed: It’s exponentially faster for Jason to use the laser and the communication board than to use his computerized eyegaze system. This is because with the communication board, he is putting together the bulk of his message word by word. With the eyegaze system, he is spelling out his message letter by letter with word prediction. Also, a head mouse — and to a lesser extent an eyegaze system — requires frequent calibration in order to work. The cursor doesn’t always go exactly where the user wants it to go. A laser is basically a straight line. It always goes in the direction it’s pointed.

Listener engagement: For some AAC users, being able to communicate independently is not the highest goal. Instead, being able to communicate rapidly and efficiently is their goal, even though it requires using a communication partner. Some people who use a high-tech communication device mention that their communication partner may “drift away” or start multitasking while they put together their message. But by its very nature, low-tech communication requires interdependence. All forms of low tech (other than handwriting) require that a communication partner be present.

Jason likes using his laser and board for social reasons. He feels that using a low-tech system helps his communication partners be more engaged, and more a part of the communication process. A low-tech system allows for human closeness, he says. Friends and family come over to help him work on his blog and type what he points to on his communication board.

This is not to say that a fast low-tech system is “better” than a slower high-tech system, or vice versa. They are both important parts of a complete AAC system.

Low tech for reasons of simplicity

Mabel’s first symptoms were slurred speech. Her family physician originally misdiagnosed her as having had a stroke. It wasn’t until six months later that she attended an ALS clinic, and received the diagnosis of ALS. Mabel was able to walk and use her hands, but by the time she received the correct diagnosis, she had lost almost all ability to speak.

The speech-language pathologist (SLP) at the clinic demonstrated different communication devices that might be appropriate for Mabel, who was ambulatory and needed something lightweight and portable. Mabel insisted that she was 72 years old, had never used a computer before and “wasn’t about to start now.” Instead she preferred handwriting to communicate, finding this easier and faster than using a computerized device.

The SLP discussed some of the drawbacks of handwriting. Mabel wouldn’t be able to use writing to communicate when she was a passenger in a car (her daughter drove her to all her appointments). A device with speech output also would allow Mabel to use the telephone. The SLP pointed out that as Mabel’s hands became weaker, she might have difficulty writing. Most communication devices are designed to be accessed in various ways, even if people lose the ability to use their hands.

Mabel received a small, simple keyboard-style communication device called a LightWriter. For the first few months, she continued to use handwriting to communicate. She ultimately transitioned to using the LightWriter and used it diligently for two years. But as the disease continued to progress, her hand function became very limited. Her SLP discussed loaning Mabel a communication device that could be accessed with head movements, but Mabel wanted to stick with a simple, low-tech system. So for the last few months of her life, she communicated with her daughter using partner-assisted scanning.

It’s common for many people to use low tech both at the beginning and the end of the disease process.

Limitations of low tech

There are certain limitations to a low-tech communication system, and certain advantages to a high-tech system.

A communication partner must be available. You can’t put a low-tech message together in a room by yourself.

A low-tech system is only as good as the communication partner. If a communication partner is impatient or unskilled, then the low-tech system isn’t going to work very well.

Limited independence. A high-tech communication device enables a person to put together a message independently. It also enables communication with anyone — not just someone who knows how to use the communication board.

No stored messages. A high-tech device can allow an individual to store and retrieve messages and text.

No email and text messages. A high-tech device can allow a person to create email, text messages, etc. Email is a very important form of communication for many people with a speech disability.

No voice output. The importance of voice output cannot be overstated. It’s important for maintaining independence; for communicating with a young child or person who can't read; for making a phone call; and for permitting caregivers to do other things while the message is being prepared.

For example, Bob uses his low-tech system for a good deal of his day-to-day conversations. However, Bob uses his communication device when his wife needs to do an activity like making dinner. That way, his wife doesn’t have to stand next to him and look over his shoulder while he is putting his message together. When Bob uses voice output, it frees up his wife to focus on other things.

So to sum it up, both low-tech and high-tech systems are important parts of a complete augmentative communication system. Having access to both ensures better communication overall.

Craig's story, revisited

One thing I love about my friend Jim is that every time I see him, he fixes me with his eyes before I leave and mouths the words "Be here now." Here's a man whose choice to continue living through the ordeal of ALS isn't from fear, but from courage. It's about just being in the present, come what may. 

I asked Jim’s wife, Peggy, to send me a photo of Jim to go with this story. She sent the one at the top of this article. It wasn’t until sometime later that I realized Jim’s laser pointer was aimed at love/heart.

Wow. I need to tell him that I got his message.

About the Authors

Margaret Cotts says her turn-ons include “long walks on the beach and adapted laser pointers. Turn-offs include people who speak LOUDLY and s-l-o-w-l-y to folks who have a speech disability.” An assistive technology specialist, she has more than 10 years of experience providing alternative, augmentative communication (AAC) services to people with ALS. She now runs Low Tech Solutions, an online resource that provides free information and instruction on low-tech communication options and sells simple communication aids. To watch videos of the strategies mentioned in this article, visit Low Tech Solutions.

Craig Philips says he’s “just a soul whose intentions are good" (and notes that he is old enough to remember the 1960s song that contains that line). He adds that he’s an upstanding citizen of Baltimore who believes “every day above ground is a good day.”

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