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From ALS Bites

Steve's Emergency Communication To-Go

A low-tech, $10 basic and emergency communication device.It isn’t a better mousetrap and it isn’t the best thing since sliced bread. But it is a very low-cost, easy-to-use, portable lifeline for those who—like me—can’t speak intelligibly and can’t use sign language or mental telepathy to say critically important things like

  • Please scratch my forehead.
  • My feet are cold.
and
  • Impeach the cretinous moron, already!

Okay, okay. Technically, only the third one is critically important. But you get the idea.

Make one for someone you love

If you have ALS or are close to someone who does, it’s likely that you know of the need for something like this. Few PALS who live much beyond the typical 2-5 years from diagnosis will escape the loss of speaking ability. There is at least one awesome technological solution: eye-gaze text-to-speech hardware and software. Tobii/Dynavox, at least in North America, is the dominant vendor.[1] My “Doodle doo-dad” does not replace that!

At times, though, a sophisticated and amazing piece of equipment like a Tobii is impractical or worse. Theaters, sports venues, and other events are examples. Outdoors can be unsuitable. In these situations and others, what is needed is a low-tech and portable way to facilitate basic communication. A good speech pathologist will offer solutions of this type, and PALS and their caregivers are resourceful and have created solutions of their own. That’s what I have done. I’ve reinvented the wheel, maybe, but what works well for one PALS may not be as helpful for another.

Choices are good. So in the hope that at least one PALS will find an inexpensive ($10), easy-to-make, portable, DIY communication tool useful, I am providing instructions for the creation and use of my device in the PDF document below. Click on its thumbnail image to download a copy.

Thumbnail of ’Communication Doodle’ PDF.

Notes

  1. Tobii/Dynavox is a result of a merger years ago of the two leading assistive communication corporations in North America. Now I am told that Tobii/Dynavox has been acquired by Europe’s leader in the field. As is the trend, choices narrow and competition dwindles among aggressively for-profit health care corporations. I don’t know what changes to expect as a result of this coming merger, but lower prices on this very expensive technology will not be one of them. [^]
 
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