I recently read The Diving Bell and the Butterfly by Jean-Dominique Bauby, which was referenced in Kirk Douglas's book, My Stroke of Luck.
Bauby was the editor of Elle magazine and suffered a massive stroke from a brainstem lesion, leaving only the ability to blink his left eyelid. His right one was sewn shut. With this ability, he was able to author a book and communicate with others by a slow process of going through the alphabet letter by letter.
Both authors were positive in their remarks about therapy, more so with ST than PT, but what struck me the most was they simply did not give up. I would like to think the therapists played a key role in keeping their spirits up and not giving in to their condition. Maybe it is the way we have to carry ourselves, being positive, encouraging, and offering praise and thanks for a well-done job at the end of each therapy session. It might be that breathing in this positive atmosphere makes their lives a little bit better and more tolerable each day.
I have only seen one patient similar to Jean-Dominique Bauby, who had Locked-in Syndrome. I was working in acute care and communication was the most difficult aspect of therapy. I remember the nurses would post how to communicate with the patient for eye movements. A PT and I went in and immediately the PT noted something similar to the ATNR for infants but the opposite.
When the patient's head was rotated to the right his right hand seemed to move toward his face. The PT was able to demonstrate this multiple times on different days; however, with most acute-care patients, we do not see the person again after discharge. I was not sure if this was a residual reflex post-stroke but it seemed if the person was to keep at it, he might improve his ability to communicate. I only hope the patient's next therapist was as good as the one I worked with.