Chapter 4 — Communication Issues
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Losing speech ability Simple solutions Voice banking |
Planning Role changes The telephone |
High-tech solutions The right words |
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Losing the ability to speak is one of the most difficult challenges of ALS. (It should be noted that this doesn’t occur for everyone with ALS.)
For the person with ALS, not being able to communicate is the ultimate isolation from the family, community or the world, especially if movement is also severely impaired. At some stage of the disease, thinking and expressing those thoughts may be virtually the only bit of independence left to someone with ALS.
For caregivers and other family members, never again hearing the sound of a loved one’s voice and the absence of spontaneous conversation are key losses of family bonds and individual personality.
The loss of speech can change, and sometimes end, a relationship unless both parties make a great effort to learn new ways to communicate. Helping your loved one communicate benefits all involved and enables him or her to stay connected with others.
Thankfully, there are a number of devices — from low-tech letter boards to computers that mimic speech — that can keep your loved one in the onversation, no matter how much muscle is lost.
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“My family often refuses to ‘work with me’ to figure out what I am trying to communicate, choosing to throw up their hands immediately and say ‘I can’t understand you,’ and walk away or have me write it down. Then I feel like what I want to express is of no interest or importance to them, and I feel angry and of less value because I can’t speak intelligibly. It seems they are waiting for me to make it easy for them, rather than being willing to exert some effort to understand.” “Not being able to express myself was like cutting off the essence of who I am” |
Resources:
Everyday Life with ALS — Chapter 6: Speech & Communication
Communications and Swallowing Solutions for the ALS/MND Community: A CINI Manual, by Marta S. Kazandjian, Singular Publishing Group, 1996
The person with ALS may exhibit waning speaking ability (dysarthria) in several ways:
- The voice may become hoarse or raspy, or acquire a strained or tight quality.
- Words are slurred, or the person can’t form words.
- The voice may sound nasal, as if “speaking through the nose.”
- The voice may get fainter or softer; check respiratory status if this hasn’t been done.
- Talking will be exhausting if respiratory health is declining. Speech takes more energy and the labored effort may weaken muscles faster.
- Problems in swallowing may be accompanied or followed by speech difficulty.
- The person will exhibit frustration, depression, anxiety or irritability at the inability to be understood.
Voice weakness or speech changes can occur at almost any stage of ALS, but tend to happen earlier in bulbar-onset cases.
Resources:
The Strain of Silence: Coping with a Loved One’s Speech Loss Calls for Inner Strength and Outside Support, MDA/ALS Newsmagazine, February 2008
When Mouth and Throat Muscles Weaken, MDA/ALS Newsmagazine, February 2001
American Speech-Language-Hearing Association, (800) 638-8255
Here are some tips for being an effective speaking partner when speech is difficult to understand:
- Check for hearing loss and use an aid if needed.
- Give the person full attention and concentrate on the face.
- If you don’t understand something, ask the person to say it again, slower or louder, or in different words.
- Ask the speaker to spell or change words that aren’t clear.
- Ask the speaker to indicate when the topic is changing so you’ll know the context.
- Repeat what you did understand so the person can simply fill in missing words.
- Talk in a relatively quiet place so that your loved one doesn’t need to project as much, which can be fatiguing.
- If you notice that your loved one’s speech is getting more slurred or the voice is getting weaker as you talk, encourage him or her to be quiet for a few minutes to give tired speech muscles time to rest.
Other assistance can expand communication.
| “I have typed the following message in a word document on the computer: HI: I HAVE ALS (LOU GEHRIG’S DISEASE) WHICH HAS AFFECTED MY SPEECH. I WILL TRY VERY HARD TO MAKE MYSELF UNDERSTOOD.” |
At first, improvised sign language helps — pointing, gesturing, asking for clarification (“do you mean xxx?”), reducing conversation to yes or no questions, using a small bell to signal for attention. Make a simple handwritten letter board and point to letters or short words asking the person to say yes or no. Your loved one can scribble notes on a pad, magic slate or a dry erase paddle. Remember that markers are easier than pencils for weakened fingers, and encourage your loved one to write or spell key words instead of full sentences.
These methods are time-consuming but effective for a while at home. But it’s important that the person with ALS be able to communicate with others besides the primary caregiver.
When speech begins to decline, a speech-language pathologist (SLP) or speech therapist referred by the MDA clinic can help a person with ALS improve intelligibility and prevent fatigue. Techniques may include speaking slowly, taking replenishing breaths after a phrase or sentence, exaggerated enunciation or spelling out words when stuck. The SLP also will pay attention to swallowing and nutrition (see Chapter 5), which are affected by weakness in the same muscles needed for speech.
The SLP also may recommend a palatal lift, which is similar to a denture or retainer, if the main problem is a nasal voice due to weakness of the palate (roof of the mouth) muscles. Exercises to strengthen the muscles used in speech usually aren’t recommended for ALS patients.
A voice amplifier can be of help if the major problem is a soft or weak voice. This will save the person energy from straining to be heard. If dexterity allows use of a cell phone or similar device, text messaging can improve communication efficiency.
You’ll develop other speech shortcuts and substitutes, and may even have fun with them. One woman with ALS rang a cow bell to cheer at her grandson’s baseball playoffs. At the next game, other parents and fans brought bells as well, and those rooting for the other team filled soda bottles with stones to shake.
After a tracheostomy (see Chapter 3), those who still have speech ability may be able to continue talking via a speaking valve added to the cuff at the end of the tracheostomy tube; this allows air to travel to the vocal cords, enabling speech.
A wireless paging system or baby monitor may be more appropriate than a bell for getting attention in the house. Paging can be part of an environmental control unit (ECU), which enables a person with ALS to control light switches, electrical appliances and more. For details, see Everyday Life with ALS — Chapter 6 or speak with a PT or OT.
Resources:
YouTube channel, ALSCommunication, videos of people with ALS using low-tech communication
Before speech declines too far, many people with ALS record their voices. This may include taping messages or stories for family members.
| “Oh please record anything you can. How I wish I had spent more time recording my precious Daddy because I am still having problems remembering what he sounded like. I wish I had helped him record a journal. Anything you do for those who love you will always be treasured!” |
They also can record key sentences or phrases, names of important people, or other frequently used expressions on a Windowsbased computer, saving the recording as .wav files. The recordings can be transferred into some speech-generating alternative augmentative communication (AAC) devices. Save each message as an individual file to allow transfer to an AAC device.
Some AAC devices have programs that allow use of a prerecorded voice. Audio files can be imported from your PC, or you can record your voice directly onto the device. Then the device will be able to “speak” in the individual’s voice instead of a computerized voice.
Many people record themselves singing, laughing, saying signature expressions or reading stories for their children or grandchildren. Some record family memories or messages for loved ones. Many family members treasure their loved one’s telephone answering machine messages simply because they have no other voice recording. Voice banking allows the family to keep much more. Everyone in the family will be gratified to hear their loved one’s voice, and the person with ALS will be happy that he or she still can be heard.
Resources:
Voice Banking & Speech Synthesis Technology, MDA/ALS Newsmagazine, July-August 2007
When speech begins to deteriorate, the person with ALS and caregiver should start planning for eventual use of an AAC. There are many options, and a customized system may take three to six months to deliver, and several weeks to learn. Start looking at options and plan for the long term. Depending on the system chosen, these devices cost from several hundred dollars to $14,000.
Check the MDA loan closet to see if there are devices to try. A university speech department or computer dealership also may have models to try without cost.
To obtain insurance or Medicare payment for the device, every feature has to be medically justified. Most funding sources require a speech pathology AAC evaluation, doctor’s prescription and letter of medical necessity. The SLP can help with AAC selection and preparation of paperwork needed.
Medicare will cover up to 80 percent of the cost for an AAC device. MDA assistance also is available for AAC repairs. Contact your local MDA office for details before making a commitment to an equipment supplier.
Medicare won’t reimburse for the purchase of AAC devices that also feature functions like e-mail, Internet access or word processing. Many AAC manufacturers whose machines include these capabilities also sell “dedicated” versions that prevent users from accessing anything but communication functions. Ask manufacturers and therapists about unlocking these features after you’ve paid for a device.
In some cases, a communication device may not be covered if the person with ALS already is in a nursing care facility or in hospice.
Resources:
Preparing for Silence: What to Do Before You Lose Your Voice, MDA/ALS Newsmagazine, March 2007
Plan Ahead for Big Purchases, MDA/ALS Newsmagazine, January 2005
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“My dad refused to communicate with the Dynavox. It simply was too time-consuming for him. So I learned all the stories he wanted to tell, listening closely to what he was saying while he could talk. Toward the end I was blessed that sometimes if Daddy couldn't even get a letter across to me I knew what he wanted to say.” “Before the communication aid, I didn’t answer the phone because no one understood what I was saying. With the machine, and the help of a good phone with a voice-enhancer, I can carry on conversations over the phone, which has made a big difference.” |
All of the changes brought by ALS, including those in speech, require some adjustments in family roles. If your loved one with ALS has been the family spokesperson, the one who handled most family business or who maintained relationships, that responsibility will shift to others. Caregivers must try to accommodate the needs and wishes of all parties involved.
Speech difficulties can be very frustrating for the person with ALS and for caregivers. Patience is required as new means of communication are developed. A caregiver may have to convince the person that it’s time to take steps to solve communication problems. As with use of a wheelchair or a ventilator, there may be some resistance to accepting this new level of loss. Offer all the support you can; patience, persuasion, the enticement of new gadgets, promises of help, a sense of humor and input from others who use AAC may help.
An inability to speak also affects the way a person is perceived by strangers, and even by friends and family. Some may assume the person can’t hear or has a mental disability, and speak more slowly and loudly to “help.” Caregivers can educate family and friends, but it’s not necessary to try to teach everyone you encounter. Save the effort for those who matter.
A representative of a medical office or an agency such as Social Security may be reluctant to speak to anyone other than the patient/beneficiary. A power of attorney granting the primary caregiver permission to speak for the person can be faxed or e-mailed to the agency, and that usually solves the problem. Word these documents carefully to prevent hired caregivers from abusing the situation.
As communication techniques develop, it’s important that the person with ALS continue to be “heard” and to participate in conversations, whether for business or pleasure. Some people with ALS carry a card such as this one:
The primary caregiver can be an intermediary, gently reminding others to speak to the person directly, not to a companion, or to be patient with the technology or other means of communication.
With AAC devices, conversation will be slowed down. AAC allows users to prepare and bank some phrases and comments, but spontaneous remarks will have to be typed in. Urge others not to talk over the person and to allow time for him or her to finish “speaking.”
Resources:
Partners Cope When Speech Is Lost, MDA/ALS Newsmagazine, October 2004
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There are ways in which a person without a clear voice can speak on the telephone. The TTY system used by people with hearing difficulties is one; conversations are typed back and forth with text displayed on a visual screen or printed on paper.
For those with a strong voice but weak hands, speaker phones and some cell phones are designed to be used with voice input only. When the person can’t operate a phone by either voice or hands, there’s also telephone relay on the Internet, in which one person types his or her end of the conversation and an operator reads it out loud to the other party. (See High-Tech Solutions below, for alternatives to typing on a keyboard.) The whole conversation can be kept as a Word document.
Your loved one also can use the AAC device to communicate on the phone. Some AAC devices even have telephone hook-up capabilities.
Resources:
Telephone Access for People with Hand and Arm Weakness, MDA/ALS Newsmagazine, October 2006
Sprint IP relay, place calls over the Internet to locations within the United States and its territories
Federal Communications Commission, (888) 225-5322, lists numbers to call in each state for speech-to-speech services
Speech to Speech (STS), free relay service that does not require the ability to type to use
When notepads and speech therapy no longer help, high-tech solutions will be needed.
First, look in the help and support section on your computer and search for “accessibility.” A number of shortcuts are built into most computer systems to assist people with disabilities. Many relate to visual impairments, but there also are shortcuts and software such as word prediction programs that help speed up communication and save energy.
You also can add adaptive mice, special keyboards, large keys, and software that enhances accessibility and convenience to your existing computer, before you get an AAC device.
Higher-tech AACs include computers that speak as the person types, or input spoken words that are displayed on the screen. If hand weakness makes typing impossible, there are “switches” (buttons) that allow computer operation with any working muscle, including the mouth, eyebrow, cheek and toes. (See Everyday Life with ALS.)
Some AACs have on-screen keyboards that can be operated by a pointing device or the blink of an eye, and many have spell check functions or can be used as a complete computer. These devices can enable a person to continue working as well as communicate.
Mainstream devices such as smartphones or iPads often can run AAC applications (apps). Although much less expensive than high-tech AAC devices, popular hand-held devices don’t always allow for alternative methods of operation, including eyegaze, head tracker or switch. Before buying, be sure the device still will be usable if hand ability is lost.
The best solution depends on the person’s typing ability, functioning muscles, comfort with technology and the purposes for the device. Do your research and select a device that’s versatile and can be adapted as your loved one’s functions and needs change.
Scientists are even testing thought-controlled devices, in which the user projects words from the brain into a computer with no mechanical interface. It’s a long way from reality, but someday it could be just the thing for people with ALS.
Resources:
Microsoft Windows Vista: Speech-Recognition Feature Enhances Windows Experience, MDA/ALS Newsmagazine, April 2007
People with ALS Share Personal Experiences with Life-Enhancing Devices, MDA/ALS Newsmagazine, February 2007
Technically Speaking, It’s a Good Time to Have ALS, MDA/ALS Newsmagazine, March 2006
On-Screen Keyboards: Computer Access Made Easy, MDA/ALS Newsmagazine, February 2006
Seeing is Believing: Eye-Tracking Technology is an Option for Computer Users, MDA/ALS Newsmagazine, January 2006
Little Communicators, MDA/ALS Newsmagazine, December 2005
Assistive Technology is Still Emerging, MDA/ALS Newsmagazine, April 2005
Free Dasher Programs Easy as ABC, MDA/ALS Newsmagazine, February-March 2005
Naturally Speaking: Voice Synthesis Study Advances, MDA/ALS Newsmagazine, February 2004
Assistive Technology News. Product reviews and articles on using assistive technology
Computer Resources for People with Disabilities, by Alliance for Technology Access, Hunter House Publishers, 2004
Smart Technology for Aging, Disability, and Independence, ed. by William C. Mann, Wiley, 2005
Speaking Up and Spelling It Out: Personal Essays on Augmentative and Alternative Communication, ed. by Melanie Fried-Oken & Hank A. Bersani Jr., Paul H. Brookes Publishing, 2000
Microsoft Accessibility Resource Centers
craigslist.org, secondhand equipment
State of the Art Communication for PALS. Film featuring people with ALS demonstrating several ways to use augmentative communication devices
United States Society for Augmentative and Alternative Communication
Vocabulary for AAC users
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