Thanks for bumping this thread back up.
blinkie, you have a great story and the personality to match.
I loved your comment earlier that you were “quite active for someone who can’t move”.
Glad to have you here.
I had never heard of Locked-In Syndrome before today. I knew who Stephen Hawking was and that he had Lou Gehrig’s, but that’s about it. I just spent 2 hours reading this thread and other resources online, and wow. I can’t fully express how much I admire you for maintaining your upbeat attitude through all of this! I can’t say I’m in the camp with people who say they’d rather die than have LIS, I’d definitely rather live with it than die. But it would be so hard and scary to make that adjustment 
The only thing I’d like to know is… do you and your close friends/family have any sort of “shortcuts” to communicate? Like if you blink three times in a row it means you want a footrub, or blink once with the left eye then once for the right eye for a hug? I just ask because that’s something I’d be likely to want to do, in the same circumstances.
Oh I lied, one more question. I guess I’m also curious to know, since you mentioned liking politics, do you vote? How does that work? Do you mail in your ballot and have your wife fill in the bubbles for you? Or do you go to the voting booth with someone to pull the levers for you?
Just happened upon this thread for the first time. A bit late to welcome blinkie to the boards, but I am glad you found us and have shared your experiences with us. The Dope is a great place ( see my join date 
).
Speaking globally about LIS, I would hope that the heightened attention brought to bear in the last few years have changed protocols in determining brain function in the first 6 months to a year after an injury.
Learning to deal is one thing. Going years or decades with nobody knowing you are 100% “there” is appalling.
How’s Tom’s River treating you?
Cartooniverse
Wow. If Coldfire makes an appearance in a thread, that must mean it is something special ( or six more weeks of Summer!)
The bump in this thread caused me to remember that I saw a movie a few weeks ago, a 1932 Raoul Walsh film called Me and My Gal, where one of the central characters was a man with Locked In Syndrome. It’s a small but pivotal role because the character saves the day by blinking Morse code which tells a cop (played by Spencer Tracy) that a criminal is hiding in the attic. It was great to see, the movie and the character. Of course his condition wasn’t called “Locked In Syndrome” then, but that’s what it was. I never knew there was a movie other than The Diving Bell and the Butterfly with a LIS character. Do you know of any others Blinkie?
I wonder: Since Hawking’s paralysis is the result of the progression of his ALS, does it count as LIS? Per Wikipedia, LIS “is the result of a brain stem lesion in which the ventral (anterior) part of the pons is damaged,” while ALS is “caused by the degeneration of motor neurons, the nerve cells in the central nervous system that control voluntary muscle movement.”
Does anyone know if there is a concise “instruction sheet” that one could attach to their advance directive in the case that they are suddenly locked-in? I have a paranoid fear about becoming locked-in and no one realizing it because they did not know how to very carefully check if I responded to blink or more esoteric forms of communication. In my advance directive I specify not to prolong life if I am in a vegetative state, so it would be important to me to have locked-in syndrome carefully rules out first by a technically-minded person, and unfortunately my family are not technically minded. So a concise instruction sheet would be very useful.
Merry Christmas Blinky!
I’m glad this was bumped.
Ever since your first post I sometimes think about you and how you are doing. Hope you had a good Christmas!
Me too, Blinky. Happy holidays to you and yours.
First thanks for the Christmas greetings, back at you. We had a great Xmas with 3 out of 4 of my kids making it home for the holidays. Good thing I taught them all to cook before I went down. Now when they come I get a seven course meal complete with wine pairings.
It’s a little weird sipping wine through a straw, but what the hell.
Yes, Hawkings is Locked In, at least I think he is.
No there’s nothing specifically written legally to check for this. I’m not sure there should be. I am extremely lucky in that I have family support and am able to live at home. This is definitely the exception.
Other movies with LIS I’m not sure. There is an LIS character in one of Dumas’s books, I think think The Three Musketeers. Have avoided looking for it. Then there was an episode of House that supposedly looked at it. Couldn’t watch, couldn’t see somebody cured in an hour.
Toms River has been great for us. My wife and I were real city folks and we only wound up here because we found a house that was accessible. We lucked out, we’re near town, public transit so we can get into NYC all the time for Broadway, etc. Our neighbors have been terrific. As a matter of fact they’re shoveling us out now.
RACHELLOGRAM My kids and I can blink about 15 wpm. I can vocalize a little now, although most people can’t understand anything I’m trying to say my family can understand me.
I usually vote by mail, but sometimes I’ll show up, like in the last presidential, just to see if they’d make me take the Obama stickers off my wheelchair before I went into the booth. They didn’t.
If anybody else was curious: yes, there was–Mos Def guest starred.
Good to hear from you again, blinkie. That sounds like a serious feast.
I’m not sure how the condition is defined exactly, but I think he can move his right cheek and that’s about it. He has a sensor clipped to his eyeglasses and uses that to enter text into his voice synthesizer. I think you described yourself as having more movement than that.
Heartily seconded. The season premiere of Gray’s Anatomy was about a man with the kind of cancer that killed my brother. There’s no way I’ll be looking that one up.
hi blinkie, hope you are doing ok! you story is very inspirational!
Wow! I don’t know how I keep missing out on great threads and great folks like this, but even so, and though you’re now truly one of the “family”, let me add my welcome as well, blinkie!
What an inspiration!
Quasi
Blinkie, did you find any video games to play?
Looks like **blinkie **hasn’t logged in here for a while:
Last Activity: 06-19-2011 04:24 PM
I pm’d him a week ago, and have heard nothing back.
Hopefully he’s just busy. :\
Wow, I just found this thread. Read it beginning to end. Read the first 3 parts of Blinkie’s memoirs. I do hope you’re OK, Blinkie. I gotta say you’re an inspiration. I’m really amazed on your outlook on life despite your circumstances.
Great writing too! I hope I can get the opportunity to finish reading your story.
I hope blinkie’s absence is the result of a temporary inconvenience.
In the event that he does return, here’s a question that I’m surprised has not come up yet:
What are your thoughts on stem cell research? Have your experiences with LIS changed your opinion at all?