RIP blinkie (Ask the guy with Locked In Syndrome)

Hope this is in the right forum. Anyway ask away, nothing is too personal if I can be of help to someone.

I’m so glad you did this!

How did it happen?
Did you go through a grieving process? How did you adjust?
How did your family deal with this?
Did anyone, friend or family, decide they couldn’t deal with it and cut ties?
Do you have any kids?

For information for everyone else: http://en.wikipedia.org/wiki/Locked-in_syndrome

blinkie. Welcome. Probably MPSIMS is the proper place, so I’m moving it.

samclem Moderator, General Questions

How are you posting? No, seriously, is it a Stephen Hawking-style hookup or what?

How did you type your post?

Also, welcome! I hope you enjoy it here!

Cool, thanks for starting this! (For people just joining in, here’s a link to the thread where blinkie first joined us.)

(1) I was reading about the device you mentioned in the other thread that you use to post, and it seems to require head movement. So you must have some minimal ability to move, yes? Otherwise I’m confused about how the equipment works for you.

(2) Do you live at home, in a care facility, or other?

Others have already asked most of my initial questions.

Thank you for sharing, blinkie. This is fascinating.

It’s nice to see that your sense of humor is intact.

Yes I do post using a Stephen Hawkings like device.
It happened in less than 10 minutes without any warning. I was comatose for 3 days and COMPLETELY aware of everything after that although it was 10 days before the doctors believed my family when they told he doctors I was “still in there”

I am married with 4 kids, and have been truly blessed by a family that fully loves and accepts the new me. That is QUITE rare for LIS people who are mostly institutionalized. I live at home and am quite active for someone who can’t move. We go out to restaurants, Broadway, and to see my beloved Yankees on a regular basis and we have learned to travel although airplanes are a bit much.
My close friends are still there but yes I have lost some “friends” who find it difficult to be around me.

As far as grieving it is looong and difficult road. It took over a year for me to admit to myself that this
wasn’t “curable” and that I wasn’t going to get better. Than I was angry, at mysel, God, just about everyone and everything.
Now I am as adjusted as I can be, appreciating things I was always too busy to enjoy.

And I have learned to stop looking up on the ladder of life. When I look down there are a helluva lot of people worse off than me.
Thanks for the welcome. Some of these threads seem pretty interesting so I’m sure you’ll see me around.
Steve “Blinkie”

Great username. Nice to have you around.

Oh, thought of another one: Please describe a typical day for you, in as much or as little detail as you care to.

(“November, week 2: spent all day every day answering questions for those nosy people over at the Dope . . .”) :slight_smile:

On preview: Wow, that’s awesome. Good for you. So when you go out and about, I suppose you use a Hawking-like wheelchair?

And a last-minute edit: What did you do before you were disabled? (Work, go to school, trust-fund baby, etc.)

And yes, now I can use my head a bit but for the first 4 years I had absolutely nothing. That’s when I used EzKeys which is what Hawking’s uses

Well I read quite a bit. Everything on the Times Bestseller list. Way too much TV.I’m a political junkie, a really crappy chess player, average crossword solver. I spend 3-4 hours a day on line, would spend more but my eyes can’t take it.
Up everyday at 6, ugh, but it takes a good 2-3 hours to get me up and ready for the day. Bed at 10, oops that’s now so I’ll talk more manana. :slight_smile:

A fascinating story!

I am wondering, blinkie, how long does it take for you to “type” your posts to us? (Do you know your wpm?) Is it significantly slower than it was pre-stroke (assuming you typed then, you said it’s been 10 years, and only die-hard geeks like me were on the 'net then :wink: (been on the net since '94, using computers since '80). Has your “typing” speed increased since you got used to they system? (I imagine it would.)

I am so glad you have a supportive family in all this.

I don’t have any questions, but I wanted to say “Welcome” and that I love your user name. :slight_smile: I hope you will check out some of the other forums and stick around a while.

I just wanted to welcome you and to let you know that your jokes (“I’m the silent type”) made me smile. I thought that true LIS was quite rare and as a physician I’ve never seen it, although as you note, many of the patients are in long-term care facilities. I, too, am interested in what you did for a living before the stroke. Also, I’d be fascinated by your input on the health-care debate.

Welcome to the Dope! I’m looking forward to reading more of this thread; between the subject matter (which doesn’t get discussed a lot) and your sense of humor, it promises to be a good one. (I’ve got to add myself to the list of those who love your user name and your comment in the LIS thread about being “the silent type.”)

You mentioned having regained some use of your head. Is this common in people with LIS? Is there any/much chance of other function slowly returning in time?

We should keep a link to this thread around, to show to all the txt-teens who insist that it’s OK to type without punctuation or capitalization because it’s more efficient that way. If you can put in the proper capitalization, then by golly, so can they.

No questions from me either, just a warm welcome to what is, in my opinion, the best board on the 'net.