Humans have an innate need to communicate. And our use of language is unique in the animal kingdom. It is, to some extent, what makes us human. It is among the signposts in our evolution. Parents remember the where and when of a child’s first words. Before there were books—or even written languages—stories, wisdom, and culture was passed from generation to generation through the spoken word.
For people with ALS and their families, keeping communication going is very important to everyone. While no two cases of ALS are the same, many people with ALS will encounter difficulties with speaking as the disease progresses, with many losing the ability to speak entirely. These challenges with speech and communication can progress quickly or slowly, and are among the emotional taxing issues a family living with ALS must face.
Given the importance of communication to us as humans, finding ways to keep communication going is an important part of treatment for a person with ALS. While doctors and ALS Association care service coordinators are an important part of that process, often times the expertise of speech language pathologist (SLP) is invaluable.
“One of the first things I try and listen for is where the challenges are. To find where their struggles are and what is frustrating to them,” says Claire Parrent, MS, CCC-SLP, who works with people with ALS served by the ALS Association St. Louis Regional Chapter, “and then trying to come up with solutions that can help with that. Then we talk about what we need to potentially prepare for. I always try and talk about options in terms of I’d rather you be prepared and not need it than not be prepared at all.”
Parrent’s work is funded through a grant from the Christopher and Dana Reeve Foundation, allowing her to personalize plans for each family she serves. Often, those plans can start before there are actual speech problems to address.
“One of the things we know changes is motor capabilities,” says Parrent. “Some people we see are still able to communicate verbally but are having a hard time using their computer or their phone, so we look at different ways they can access those things to still be able to communicate with family with email or text.”
Early on in the process is also the time to start thinking about message or voice banking, a process when words or phrases are recorded for possible use with augmentative communication technologies if loss of speech happens. This way a person’s real voice can be used with the speech generating device rather than a computer-based voice.
“When we get to a situation where we are doing some message banking or voice banking, I find it important to talk to family members about helping a person with ALS come up with messages that they would like to be banked,” says Parrent. “I’ve had situations where grown children have said ‘I want you to record these sorts of things, because these are things you say to me all the time.’”
“These are things that help people preserve that sense of humor and sense of self,” Parrent continues. “When sometimes (the person with ALS) may be focused on things they need to meet any needs for the day-to-day, involving family members to preserve their personality through message banking is always really helpful.”
If and when technology is needed to assist with communication, a SLP like Parrent can help determine the correct technology to use, as well as help with set up and training if needed. However, as with any form of technology, it is best to not be entirely reliant on one thing.
“Having a communications device is fantastic, but there are going to be times when maybe the device doesn’t work or maybe it can’t be positioned properly to work,” says Parrent. “I always like for people to have multiple options. So we might look at some of that flashy technology, but also have options like a letter board to help people spell things, or a dry erase board. Often once people starting using so-called ‘high tech’ items they quickly realize that having a backup is a good idea.”
So the role of a speech language pathologist isn’t to just find ways for people with ALS and their families to communicate, it’s to find the ways that work for that family, at that time. The SLP is part of ensuring that a person with ALS has a voice, be that through their own speech or through technology.
ALS is a journey, and the road is not always straight, but there is help along the way. It is necessary to communicate your needs, after all, in order to keep communication going.