update on the "locked-in" man

I was called back to review the 'locked-in' man a few weeks ago - sometime early January 2007. He looked the same from afar, but after talking to his nurses and his brother, i took note that he may be boderline 'locked-in'. However, having said that, he still has limited movements. BUT he is trying to move, which is unlikely 'locked-in'. Anyways, am i confusing you?

I had to assess him after maghrib the day after referral. During office hours, the wife was not there as she looked after the husband during the night. He is looked after his brother during the day, however, he does not interact with much with the patient. The patient, speaks well to his wife, and she is able to anticipate his needs. I opted to wait and see the wife, hence, after maghrib. During the day, wife looks after the house, and also as the 'driver' to her grandchildren, a chore patient used to carry out.

He communicates using blinking. one blink for 'yes' and two rapid blinks for 'no'. He is also able to count with his eyes... eg. one shut eye and blink is 'one' etc. I asked him a lot of closed ended questions, answerable with 'yes' and 'no' and they are 100% right. I also asked him questions that has choices and answers are very reliable. So i conclude he has understanding of his surroundings. He also understands language. I would like to perhaps do a communication assessment and see if he is able to communicate using an alphabet chart, however, this has not been request or ordered. Do you think i can just barge in and do it???

The doctors wanted to know if he is able to swallow, but, looking, observing and listening to his nurses, brother and wife, i knew the answer is NO. However, i had to do an assessment to record findings. He wasn't even able to tolerate his own saliva, choking on them. The patient himself has more sense... he knew he wasn't able to swallow and refused and was afraid of eating and drinking. Negative feedback from choking on his own saliva, i concluded.

On the brighter side, patient is able to understand jokes and had been heard to give off a loud vocalisation to indicate the 'funny-ness' of the joke. He is also able to open/close his mouth. He has several facial grimicaes, different ones indicating different needs. He also shown good progress in trying to move his limbs - move about an inch of his hands. These does not look much, but it is... considering we thought he could not. He is also lucky enough to have the love of his wife, children and grandchildren whom are always by his side.

Back to the darker side, family members are unaware, or perhaps aware but unable to dechiper the true and deep meaning of it all. They 'children' asked me if patient is able to perform Haj next year. He was supposedly going this year, but due to the stroke, had been postponed. How do you answer something like that... I told them to consult the doctors and therapists that are working with him currently.

As of that, he was again, put on review until the time where he would benefit from proper intervention from my services. How fair is life?

I am tired of not able to do things. I am tired of unable to do things. I am tired of my limitations. I am tired...