machines that speak

Yesterday Janet Wendy and I had a useful session with Margo Butler, the speech language pathologist, and 'Frankie' Nadeau, one of the occupational therapists who specializes in user-friendly equipment at the ALS Clinic. The purpose of our meeting was to learn more about the speech synthesizer, a very fancy electronic device that can speak for her now that the muscles she uses to speak are no longer consistently receiving effective signals from nerve endings that have atrophied. That's the underlying problem with motor neuron disease (ALS): the nerve endings that supply muscles atrophy, or die, so the muscles no longer receive signals, and stop working. This happens both to voluntary muscles like those in the fingers, hands, and voice-box, and to 'automatic' muscles like the diaphragm and the muscles between her ribs that she uses to breathe. That's why a ventilator at night while she sleeps is a great help, because it gives the breathing muscles a chance to rest. It's her voice-box muscle failure that is making it impossible for her to speak intelligibly for an increasing part of the time. Eventually her voice muscles will fail altogether. So soon she will have a device like the one that the theoretical physicist Stephen Hawking uses, but a nice female voice rather than one that sounds like a Dalak or a spaceman from another planet. She and I liked the machine she tested very much and hope it can be delivered really soon; but it comes with a stand that has a very large footprint. It will fit easily enough in our spacious living room amid all the clutter of walkers, equipment tray tables, wheelchairs etc.; but I fear it's going to be hard to avoid tripping over it. However, that's a small price to pay if it works as it's supposed to. The speech synthesizer can be programmed with commonly used words and phrases, and we spent some time creating a personalized list to add to the ones already included. It will be fun to play with this, and we hope we don't have to wait too long for it. I'm beginning to sense that because Janet Wendy is in her mid-80s, she is quite rightly lower on the priority list than someone half her age who needs the same sort of equipment. I think that's the reason we have waited so long, so far in vain, for a power wheel chair. It may be the same story with the voice synthesizer, but I hope it isn't. We will know if we don't receive the equipment within3-4 weeks that she has been bumped down low on the priority list.