Any way to communicate with a patient with Locked-In Syndrome?

I never stop being amazed at how much of modern technology is Star Trek inspired.

I’ve done some research and it’s called a brain-computer interface or direct neural interface, although it has been in use since the 1970s. I’m sure there have been breakthrough improvements, though.

The brain stem stroke just left my late husband’s brain unable to communicate with the rest of his body. That’s why he was mute and completely paralyzed (except for blinks and right middle finger movement – very faint).

Unlike some stroke victims, who have mood swings in anger, sadness, Jimmy remained the same mentally as he was the day before the stroke. His emotions remained the same, so in his case, there was no detachment from his body and emotions. Sure, he got made when a health care worker did something ungifted and got sad at various times.

I believe it’s up to the patient to decide whether he or she wants to receive treatment. It is surprising what you will survive and deal with on a daily basis for the opportunity to live.

It’s important for people to make decisions about their health care while they are able to make decisions. If you don’t want to live “locked-in” be sure and create advance directives, so your family knows what to do. If you do want to live under all medical circumstances, be sure they understand this, too.

The new technology available for Locked-in folks is incredible. I was also recommend the original poster create a Google Alert for Locked-in Syndrome. It’s a great way to keep up with technology posts to assist in LIS cases and to meet people, who are living locked-in.

Xmas eve will be ten years for me. Anyone who is diagnoseing LIS after 10 days should have their license revoked. There is no way to determine LIS this early. It takes 6 month, MINIMUM, to determine if a person is Locked In. 90% of people who are Locked In are only that way temporarily. Visit any stroke site and you will find people who were “locked in” for a while.
That being said, at first your vision, sense of taste and smell, and your internal body thermostat are way out of wack. This will normalize.

Read the book, “Diving Bell and the Butterfly” by Bauby. Actually he’s funny, it’s not sad.

Age has a lot to with recovery, younger the better. I was 51, which is considered old for this type of stroke. If you want someone to talk with about this in detail email me at chiappa@aol and I’ll give you our phone # and my wife, Cindy, will answer any question in detail. Me, I’m the silent type.

sorry you asked how I post. My short term memory can be spotty. This is the system I use But this is about the 5th system I’ve used. I’ve done Dynovox, EzKeys, Wivik. There are a variety of systems but at ten days they’re probably seeing double anyway.

Blinkie, just curious, have you ever done an ‘Ask the…’ thread? I am very interested in your situation.

Welcome to the boards blinkie.

I don’t know what that thread is. I got to this board yesterday because Google notifies me whenever LIS is queried. Thanks for the welcome.

Every so often someone starts a thread called “Ask the [fill in the blank]”. We’ve had a wide range of these - ask the gay guy, ask the amputee, ask the pilot, ask the medical student, you name it. Someone even compiled a list of “Ask the [fill in the blank]” threads at least once.

I’m certain we’ve never had one that is “Ask the guy with locked in syndrome”.

I am equally certain many here would find it interesting.

Best Line I’ve heard all month… :smiley:

Welcome to the Boards, Blinkie, I do hope you stay.

Yes, blinkie, please start this thread. I can think of several questions already, and we shouldn’t hijack this thread any further. If you feel a question is too intrusive you can always decline to answer. But everyone usually learns quite a bit from these threads, as we get answers to many questions that might be awkward to ask in real life, or we might not be in contact with someone who can answer them.

And another hearty welcome!

Ditto! Great username, too!

I saw this video on 60 minutes several months ago and was so amazed by it I started a thread. The last segment in particular. Something like this may not be an option for you, but it shows there may be a promising future with this type of technology. Its really amazing.

But with a sense of humor, I see. :smiley: Count me in as another who’d love to see an “Ask the…” from you!

ETA: Looks like you’ve already started it! Here’s a link for everyone else:

Ask the guy with Locked In Syndrome

The one done by Idle Thoughts is the one I have bookmarked. Enjoy!

Welcome to the board!
I hope you enjoy Straight Dope-it is a unique and very nice place. Lots of interesting and knowledgable people here. We hope you will stay and share your knowledge and experiences with the rest of us.