Does the depiction of Captain Pike in “The Menagerie” really tick you off or are you just glad that someone figured out how to better communicate with people who are locked in better than they did in that universe?
blinkie, thank you again for this. I can’t tell you what it means to someone who’s loved one is facing these issues to hear about life from someone like you, who’s been there and adjusted as well as you so obviously have. So, a few more of the million questions:
You said that the medical staff did not try to communicate with you. Was it through them, or your family that you were hooked up with the devices you now use?
In the early days after your stroke, did you want your family to ask you questions on each visit?
Were there specific questions you very much wanted them to ask?
Were there any kind of questions you wish they wouldn’t bother you with?
How long after your stroke were you able to clearly communicate?
For caretaking, do you have home health aides or the like who come in? How many a day? How much does your wife take on in regards to your care, or your kids?
What questions do you wish people would ask you, but they never do? 
Broomstick
My wife is my caregiver. We did have “help” but the Home Health Aides were horrific. We do have specific plans for when it becomes too much for her. Luckily for us New Jersey has a program that pays her to take care of me so I can remain in the community. My kids were adults when this happened and were all over the country, from Oregon to DC. My youngest daughter moved close to us to give Cindy a hand.
Koeeoaddi
Maybe I was too hard, some of the aides tried to do the letterboard with me but they never quite got it.
My family was all over the web the first day looking for ways to communicate with me. They found the “letterboard” before I came out of my coma. About a week after they explained it to me and I slowly spelled out.
l-u-v-u
s-l-o-w-d-o-w-n
i-m-h-e-r-e
and because my trach was bothering me and they needed a puzzle
i-f-e-e-l-l-i-k-e-a-v-e-l-o-c-o-r-a-p-t-o-r
I did go to a rehab hospital after about 3 months and they did show us a lot of assistive technology .
In the beginning I felt like I had just gone 15 rounds with Mike Tyson. I ached and felt all swollen. I was there every time they spoke to the doctors, they insisted on that, so no questions…
Lee
Don’t know that character. I know about a Locked in character from 3 Musketeers but that’s it.
Svejk
Oh I would say that most people assume I am as dumb as a zuchinni. It’s truly amazing what some of them will say. In my previous life I was probably the same way. They also assume I am deaf, which can be bothersome because I am sensitive to loud noises. But there are a whole lot of what my wife calls “little angels”, total strangers that stop and help us all the time.
It’s cool you can actually talk to stranger from all the world over the Internet - and if you wouldn’t have made this thread, I’d have no idea at all of your situation. Talk about tearing down barriers. Thank you for this thread, this really showed me a new perspective.
As you are posting here, so I assume you can use a computer. Do you have some sort of control center you can use to play movies and music and all that on your own? It’d be interesting to know about your equipment.
Captain Pike, due to some accident, cannot move but is wired up to a light that blinks once for yes and twice for no, and that is all he can communicate. They say he is fully aware, but the only thing they figured out for communication is yes and no, like they have never heard of binary or morse code.
Didn’t see this mentioned but I might have missed it - the film The Diving Bell and the Butterfly deals with locked in syndrome. The guy writes his memoir by blinking, then died like right before it came out IIRC 
It’s a great film though.
myskepticsight
Ah yes the movie. Didn’t see it but read the book. Wanted to go but it wasn’t playing around here. It’s on my Netflix list but there’s always something I want to see more.
A few of my online friend knew him but our conversations are limited by their limited knowledge of English and my reliance on 6 months of high school French.
In Hiding
I have a basic ECU system that allows me to control my TV, DVD player, telephone (I can make pre-recorded calls, and accept calls from family and friends) It also allows me to control lights and ceiling fans.
Beautiful thread, blinkie. Do you find the behavior of the general public annoying? Like staring? Pretending you aren’t there? Assuming you have a mental illness? Asking stupid questions?
Blinkie, you’re a pretty cool person, and your family seems to be exceptionally strong. I’m trying to imagine myself in your position, and I can’t. It just seems so foreign and alien.
What was your former life like? What did you do for a living? What would you do first if you were suddenly cured?
Seconded.
Thanks for joining, Blinkie, looking forward to reading your stuff. Lots of political junkies 'round these parts (of course, all the intelligent ones are Lefties :D).
Do you feel as if the function of your mind or emotions has changed since the injury, maybe as a result of not being able to get out and interact with people, see new things, encounter new ideas, etc? Do you feel increased or decreased mental sharpness or emotional engagement?
Actually, from the sound of his posts it seems blinkie does get out of the house, see new things, and at least on the internet he certainly interacts with other people… but I’d expect there have still been some significant changes to how all of the above happen.
I’m still a little surprised that his wife does all the care, that can be a LOT of work! Blinkie, does your wife work outside the home?
thanks!
I was very excited when I realized that blinkie had started this thread.
So, again thanks and I appreciate the thread.
It is very interesting and I have learned a lot. My wife deals with disabled students and has some kids who communicate using similar technology. But she doesn’t talk about details much.
If you’re interested and have the capability, I believe that is one of the movies that Netflix has as a “view it now” option online. Might be good for sometime when you’re in-between movies.
I have been following this thread since it started and debating on posting. The very idea of being “locked in” horrifies me. If it ever happened do me I sincerely do not know how I could maintain my sanity over the endless frustration of it all. Blinkie, you strike me as an incredibly strong person who has managed to deal remarkably well with what is to me one of the toughest forms of personal adversity I can imagine: Living in a body that has utterly betrayed you. And you’ve done it with candor and a sense of humour, so thank you for this. It is inspiring and encouraging.
When you say that the home health aides were “horrific,” was it just that they were apathetic and abrupt, or that they just really didn’t understand how to deal with someone in your position?
When strangers treat you like you are deaf and/or dumb (in either sense of the word), are you able to rebut and snap off a retort or is it just not worth the bother?