RIP blinkie (Ask the guy with Locked In Syndrome)

Miscellaneous and Personal Stuff I Must Share
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Blinkie, dear Blinkie,

I have so many things I want to say and ask. My head and heart are so full; full of hope, full of joy, full of confusion, and full of questions. I want to be mindful of your time and your offering of support, encouragement and answers. I have been humbled by your candor, your humor and your story.

Thank you. Thank you. Thank you.

Bless your wife, your children, your “angels”

This hits especially close to home for me. My name is Tiana. I am 28. My father sustained a brain and spinal cord injury 22 years ago. He later suffered a stroke which stole from him his last ability to communicate with us (aside from blinking); sign language.

After a very looooong time in the hospital, my dad entered a nursing home. My grandparents could not live with the quality of life, or lack thereof, my dad was receiving. They brought him home over two decades ago and have cared for him around the clock since.

My grandparents are now retired from their jobs but have never retired from their love and commitment to my father. Money is tight but love is abundant.

My dad is full of love, laughter and charm. Anyone who spends any time with him instantly realizes that. He laughs when you tell a joke, he cries out in pain, he seems to ponder things. He is a quadriplegic. He cannot talk. He is fed through a g tube. My father has not been diagnosed with Locked In Syndrome. Aside from the initial brain scan 22 years ago, no other tests have been done.

We are not overly hopeful or unrealistic people. But how could we be given this information and not at least try to bring more attention to his cause? My grandparents are with him day in and day out. We do know that he is there.

How were you diagnosed? Who can we contact? What steps are needed to get this diagnosis when most medical professionals may not even know much about this or believe in it enough to give him a chance? What support groups can you recommend? Any other information to get us started is greatly appreciated.

I am posting a link to a picture that was taken a couple years ago of my father and me when I was visiting. It was taken right after my grandma said, “Look at your daughter, Gary- she looks just like you!” Followed by my grandpa jokingly saying, “And she’s just a stubborn, too!” Look at his smile :smiley:

http://www.flickr.com/photos/34916656@N04/4131312959/

So, thank you again, Blinkie. And please say hello to Cindy and your children from me.

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Thanks for the reply blinkie.

Cure all for LIS, or something else? :smiley:

FlightlessBird, thank you for the link to the story. Wonderful to see you Mr. and Mrs. Blinkie!

There’s one thing about that story that bothered me though. A woman was holding Rom’s hand and guiding his finger to the letters. There was no indication he was the one choosing the letters. It’s not that I doubt his story, but on the comments section of another website I read, there are other people who are doubting Rom’s story. I watched the ABC piece and thought, oh boy, those doubters are going to pick up on that and run with it. I haven’t been back to check, but just to give me something to throw back at them, how can we tell that it’s Rom choosing the letters and not the woman?

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Simple! Ask him something only he could know. Or, send the woman out of the room, give him a secret word, and then invite her back in and ask him to get her to type out the word. Wouldn’t that prove whether or not he is actually “directing” her?

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How about we give him one of those machines that allow him to communicate by looking at stuff or by eyeblinks, so he can be asked questions without another human in the loop. That would eliminate any question, wouldn’t it?

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Equipoise

That part about him looking guided bothered me too, but it was really poor TV and not an attempt to deceive. The system he was using for communication only lets him type at one word per minute maximum. Makes for bad TV, kind of like watching grass grow. I hope to be able to “talk” with him but I’m not sure if he speaks English.

I’ve also seen posts comparing him to Schiavo, what crap. He had NOT been tested for cognitive function for more than twenty years. The technology simply wasn’t there. Teri was tested numerous times and there was nothing.

You can’t convince them of anything. I really advise a living will. I certainly wouldn’t want my parents or my kids making decisions that I want my wife to make for me.
When the time comes I know she’ll have the good sense to let me go. Although that fact is always there for us we try not to let it ruin the time we still have.

And about the Viagra thing, they to target me for LIS but I don’t know how they got my name.
RealistHope

I’m going to respond to you tomorrow because Cindy is taking me off line now and I think my response will be long and involves a bit of a rant. When was that picture taken?

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I hope they do any of those things. Not to please me, because I don’t doubt the story (the doctors would have to be in on it and it wouldn’t help their reputations if it were found to be a hoax) but to eliminate any doubt for the doubters.

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I’m thinking she was probably supporting his hand rather than guiding it to the letters, but it’s hard to tell.

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Wonderful, Blinkie!

That picture was taken just a few years ago. The quality is poor because it’s scanned in but the only thing that’s really changed with my father since then is the addition of a few more gray hairs on his beard.

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Thanks for sharing your story, blinkie, and mrs. blinkie.

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The version on CBS made it clear that she’s his regular amanuensis (my word, not theirs), and that she’s tuned in to the nerve impulses in his hand.

Not that that would convince the nay-sayers, of course.

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If Rom’s aide would close her eyes while assisting, it would go a long way to demonstrating that she wasn’t unknowingly guiding his hand. Or if he used one of his languages which she doesn’t read.

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blinkie, you can tell mrs. blinkie that seriously the first thing I thought when I saw your part of the segment was, “Wow, Mrs. Blinkie is really attractive.” No kidding!

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Great to see the ABC segment too (I know, this thread is full of "me too"s, but, really, it’s hard to resist!) A question arises: does Mrs. blinkie have to stay in the room with you (for assistance) whenever you’re on the computer? (Myself, I love my alone time on the computer). If this is the case, then hi, Mrs. blinkie! Too bad they couldn’t cover more of you guys on the segment!

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Blinkie, first off, you are an awesome dude. I have to admit, the guided communication thing looked completely bogus. I’d compare it to parents and caregivers who perform the “facilitated communication” with their autistic kid. I don’t blame the parents for wanting to believe it, but I’m highly skeptical and that in most of the cases, it’s just the parents optimistic hope and their own prose. It would have been a lot more compelling to just do a fast forward with a clock in the background to show how long it takes people with LIS to communicate.

Mrs. Blinkie, you know the camera adds 10 pounds!:slight_smile:

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Why was the nursing home so bad? Was it mostly old people?
Gotta say…there does seem to be a lot of stuff for pediatric and old people who need nursing homes…but there doesnt seem to be all that much for young-ish adults who need nursing homes.
(except of course if you’re a person who’s always had significent mental retardation or other needs)

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My teenage brother had the same problem a few years back. It wasn’t easy for my family to find a rehabilitation center that had anything to offer a non-senior, and even there he was one of the few non-elderly residents.

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MsWhatsit

Mrs. Blinkie got a real laugh from your comment!

Dhkendall

No, Mrs. Blinkie doesn’t have to stay in the room with me when I go on the computer. She does have to hook me up initially but then she can leave. We’re hoping that by January I’ll be able to go wireless and she won’t even have to set me up. Should be able to get on line without any help. I like my alone time too!

Darryl Lict

Sixty Minutes did a segment a while back on LIS where they went out of their way to explain that the person they were doing the segment on was given the questions in advance and he was given time to give his answers ahead of time. I’m skeptical most of the time too! This condition is really rare, of all the doctors I’ve seen so far only 2 had ever seen someone Locked In.
Let me guess, you’re single. If I ever told Mrs. Blinkie that the camera made her look 10 lbs. heavier, me and my wheelchair would find ourselves out in the street.

Marley23 and AboutAsWeirdAsYouCanGet

It’s a good thing I was mostly out of it when I was in a Nursing Home. I was in a “good” one, very highly rated. If you’re really not sick maybe, but if you need any kind of real care, forget about it. Staff goes down in both quality and number the minute visiting hours are over as does the quality of personnel. Maybe I’m jaded by the infections or the pressure sores or quite possibly spending a few nights in your own waste. It could be the incorrect medications I was given. I’m a little jaded but I am definitely not going back.

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My first thought was “She must be a lot younger than Blinkie”, sorry, it doesn’t seem very diplomatic :smack: .
Darryl Licht was thinking of this article.
Thank you for the many answers.

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Mikkel

Mrs. Blinkie is actually 2 weeks older than me. When she became 18, the legal drinking age at the time, she gave me hell for 2 weeks when she became “legal.” I’ve teased her ever since, and for two weeks in January every year I remind her of this HUGE age difference.

RealistHope

Your name says it all. I don’t want to give you hope and then have it come crashing down. Your post says two things he had “a brain and spinal cord injury” and “he can communicate by sign language”. Your dad looks for lack of a better word, normal.
In the picture I see that he has his mouth open. If he can control that movement, opening and closing his mouth, he should be able to operate a computer. That’s how I started.

Again I don’t know what the extent of the brain damage is and I want to say again don’t get your hopes up but it’s sure worth a try.

Please tell me where he lives as programs vary wildly from state to state. Some states mandate communication devices, some don’t. Irregardless, for less than $500 maximum, your dad could be hooked up to any laptop. There are free downloadable systems that can integrated with inexpensive adaptive hardware.

Has your dad ever done any “recreational eating”, for the uninitiated that’s monitored eating in a rehab facility. My friend in Malta just came off a gtube after 11 years. When was the last time he took a swallow test. Things do change. I never could pass that damn test, but I’m Italian. We have to eat.

Your family is the perfect example of why we need HealthCare reform NOW! This is America, and this man is being cared for by his parents. If he was under the “socialist” system my English friends ENJOY he would be provided full-tie caregivers in his own home

Sorry for the rant but this really hits close to home. If you get sick in the US you better have someone who really, really loves you or one hell of a lot of money. Otherwise you’re screwed.

Enough rant.

I was diagnosed officially 3 months in. An awful lot has happened in 22 years. Test, test,

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Did your family keep your gifts wrapped, waiting for you? All I can think of is the lyrics to “Grandma Got Runover by a Reindeer”