A patient and her family sit across from me and she has just made a confession:  “I still mostly use handwriting to communicate.”  She can’t even make eye contact when she reveals this.  Two months ago she received a keyboard-style speech generating device (SGD).  Her device was carefully selected during an evaluation and trials with other devices too.  Her guilt now stemmed from continuing to use handwriting when she had an SGD.  

I hear lots of SGD related confessions: “Well, I mostly use my SGD for email.”; “I prefer to use low tech communication with my family.” “I only use my SGD when I go out, when guests are over, and on the phone.”  

Why the tone of guilt?  Perhaps there’s a rumor that you have to be faithful to your SGD.  Another rumor might be that the only valid use for an SGD is to produce speech.  Well, I advocate communication method promiscuity! In this day and age we are all doing it.  Throughout an average day I spend time communicating, via email, speech, the phone, text messages, faxes, writing and Skype.  Why wouldn’t someone who uses AAC find a wide variety of communication methods necessary too?

Yes, speech generation is essential for most augmentative and alternative communication (AAC) users but so are other methods of communication. Often patients with ALS (pALS) even prefer other communication methods in specific situations, with certain individuals, or at certain stages of ALS progression.  Unfortunately these other methods are never explored adequately for most pALS.  Often during the few visits pALS have with their speech therapists all of the attention is focused on SGD selection and training. 

PALS range from touch typists to eye gaze users, but no matter their physical abilities, AAC users can benefit from learning about a variety of communication methods, tools and strategies.  There are phone, email, text messaging, and low tech options for people of all abilities.  These communication methods are frequently inexpensive and simple to implement.    

Here is an example of the variety of methods one of my patients, Susan, draws on to communicate.  The pie slices I think nicely illustrate the reality of effective AAC use. 

Susan is a patient with ALS who has lost her ability to speak.  She is still able to walk, write, and type.  This is a profile that illustrates the amount of time she used different communication methods 7 months ago as compared to now.

As you can imagine, Susan considers each part of the pie necessary for a complete communication system.  As her needs change, methods will likely fade out, being replaced by other methods better suited to her physical abilities. 

On an ongoing basis, I’ll introduce and discus some of these options and provide readers with resources for getting started with them.    I look forward to sharing some of the solutions my patients have found helpful and hearing about methods that are invaluable to you.