Ron Harrison, 72, of Lake St. Louis, Mo., joked recently about one of the hallmarks of ALS — the loss of speech.
When his wife of 43 years, Darlene, and a family friend were unable to decipher what Ron was trying to share with them, he repeated it until, after numerous tries, it came out clearly.
“I do not have a speech problem,” he managed to say. “Everyone else just has a hearing problem.”
Darlene says she and Ron usually are able to maintain humor and a good outlook in the face of ALS. But his progressive loss of speaking ability has been harder both on an emotional and a practical level than some of his other losses.
“He was a big talker,” Darlene says, noting that Ron’s ALS, diagnosed in April 2000, progressed slowly, but that the loss of speech, when it finally did happen, went quickly. Now Ron occasionally is able to form some key words clearly, but his use of a ventilator hinders even that ability.
|Larry Hill is able to speak a few words on occasion, but primarily relies on other methods to communicate with his wife, Mary.
Having limited movement in his right hand, Ron sometimes uses a computer with a standard mouse and on-screen keyboard, and VS (Viking) Communicator 3 Pro software from Viking Software, to help out with his communication needs. He plans to trade the standard mouse for a trackball when it becomes necessary, and when that’s no longer an option, he’ll begin using his NaturalPoint SmartNav3, a hands-free mouse that can move a cursor by way of a reflective dot on the bridge of his glasses.
The Harrisons found help early on through MDA ALS support group meetings, where speech therapists presented information and tips on dealing with speech loss, such as working on breath control and posture, slowing down and taking time to enunciate clearly, and using the letters of the alphabet (written on boards or paper) to aid communication. Those tips made it easier to manage and cope with speech loss when it came to pass.
Darlene embraces the idea that, “Circumstances come up, and you just have to deal with them,” but she says it’s important, when facing something as difficult as a partner’s speech loss, to have an outlet for venting frustrations. Using the “Share the Care” model, Darlene formed her own volunteer support group to help her care for Ron on weeknights and Sundays. She talks with someone from the volunteer group when things get tough.
“If you can’t find a way to deal with it, then you need to go to someone who can assist you in dealing with it,” she says. “You do what you’ve got to do.”
Tips from an SLP
Maranda Martin, a speech-language pathologist at Barnes-Jewish Hospital in St. Louis, runs an outpatient augmentative communication clinic where many of her clients have ALS.
Martin says spouses often express frustration and sadness over their inability to understand what their loved ones are trying to communicate, as well as feelings of “sadness at the voice of their loved one being lost, and feeling as though they have lost a part of their spouse as a result.”
Martin says a partner’s speech loss is particularly devastating to caregivers because it can lead them to feel helpless and unable to fix the problems their loved ones might be experiencing.
Also, she says, much of what a person represents to others is in their voice — “inflections of happiness or anger, sayings or quirks that are unique to that person.” The voice serves as a link to who the person is, “and when that is gone, the caregivers feel as though they are losing that person entirely.”
|Ron Harrison practices with his NaturalPoint SmartNav3 hands-free mouse (note light beam emanating from glasses), so he’ll be ready to use it for communication when necessary.
Martin adds that it’s not uncommon for spouses and partners to feel frustration and guilt as well.
“Many caregivers have difficulty admitting and/or expressing these feelings and finding ways to cope with this loss,” she says. “I think a lot of times the caregivers feel selfish or embarrassed over having these emotions and as a result tend to keep them in rather than finding avenues to help resolve their own mixed emotions.”
Martin suggests scheduling an early consultation with a speech-language pathologist experienced in working with people with ALS, in order to prepare for speech loss and make the transition easier when it happens.
A wide variety of ways exist to compensate for speech loss, from low-tech letter boards to augmentative alternative communication (AAC) devices that simulate speech, with various interfaces available to those unable to type on a standard keyboard. (MDA pays $2,000 toward the purchase of a communication device.)
Spouses and partners should communicate their wants and desires about communication, “so that all involved can come to a mutual agreement on paths that they wish to take as a couple,” says Martin.
“If this is done early, people have more time to gather information and make informed decisions rather than reacting quickly to a situation based on need and dealing with any emotional ramifications after the fact.”
Be strong; seek support
Like Darlene Harrison, Mary Hill of Hazelwood, Mo., says her husband Larry’s speech loss has been one of the hardest things to deal with in the battle they’ve waged against ALS.
|Darlene Harrison has learned to “interpret” what husband, Ron, tries to say. “Usually, with one word or two I can put everything together,” she says. “But sometimes one of us gets frustrated and I have to say, “I’m sorry, I just don’t understand.”
Larry, 70, received his diagnosis in 1993 and his speech began to fail in 1997.
“We used to talk a lot,” Mary says. “I miss that more than anything. The hardest thing for me to deal with is trying to get his ideas on things.”
The Hills often communicate through a combination of Larry pointing, gesturing or writing, and Mary working to guess what he’s trying to say. Although he has a DynaVox 3100 augmentative speaking device from DynaVox Technologies, Larry has to “hunt and peck” and has taken to using the device only when the two go out.
One thing Mary wishes she’d done is more fully explored the idea of having Larry record his speech before his ALS progressed.
“My daughter and I both decided that we didn’t want that,” she says. “Now I wonder if that was the right decision.”
Echoing Martin’s recommendation about communication between spouses, Mary says this is one of the things couples should talk about early on.
“I didn’t want to have the recording in the beginning,” she says. “But now I wish I would’ve — so I don’t forget.”
When it comes to finding ways to cope with her husband’s speech loss, Mary shares views similar to Darlene’s.
“Take one day at a time,” she says. “Do what you have to do now and face next week when it comes.”
Mary says having an outside activity that isn’t focused on Larry is crucial to keeping her stress levels down. She enjoys walking, and also finds support through her church and MDA support group meetings.
“A lot of times I’ll feel down,” she says. “Then I go to church — the support of other people helps.”
Mary and Larry were among the first members of the St. Louis region MDA ALS support group in 1994, and they’ve gone nearly every month since then.
“It gives you an outlet,” Mary notes. “It helps more than I can say.”