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  #1  
Old 11-09-2009, 08:29 PM
blinkie blinkie is offline
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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.
  #2  
Old 11-09-2009, 08:34 PM
EmAnJ EmAnJ is offline
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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?
  #3  
Old 11-09-2009, 08:35 PM
EmAnJ EmAnJ is offline
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For information for everyone else: http://en.wikipedia.org/wiki/Locked-in_syndrome
  #4  
Old 11-09-2009, 08:36 PM
samclem samclem is offline
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blinkie. Welcome. Probably MPSIMS is the proper place, so I'm moving it.

samclem Moderator, General Questions
  #5  
Old 11-09-2009, 08:39 PM
appleciders appleciders is offline
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How are you posting? No, seriously, is it a Stephen Hawking-style hookup or what?
  #6  
Old 11-09-2009, 08:39 PM
picker picker is offline
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How did you type your post?
  #7  
Old 11-09-2009, 08:41 PM
EmAnJ EmAnJ is offline
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Also, welcome! I hope you enjoy it here!
  #8  
Old 11-09-2009, 09:20 PM
Scarlett67 Scarlett67 is offline
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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.
  #9  
Old 11-09-2009, 09:34 PM
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Thank you for sharing, blinkie. This is fascinating.

It's nice to see that your sense of humor is intact.
  #10  
Old 11-09-2009, 09:43 PM
blinkie blinkie is offline
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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"
  #11  
Old 11-09-2009, 09:46 PM
Isamu Isamu is offline
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Great username. Nice to have you around.
  #12  
Old 11-09-2009, 09:47 PM
Scarlett67 Scarlett67 is offline
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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 . . .")

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.)

Last edited by Scarlett67; 11-09-2009 at 09:49 PM.
  #13  
Old 11-09-2009, 09:47 PM
blinkie blinkie is offline
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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
  #14  
Old 11-09-2009, 09:56 PM
blinkie blinkie is offline
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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.
  #15  
Old 11-09-2009, 09:57 PM
dhkendall dhkendall is offline
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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 (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.
  #16  
Old 11-09-2009, 10:54 PM
Hockey Monkey Hockey Monkey is offline
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I don't have any questions, but I wanted to say "Welcome" and that I love your user name. I hope you will check out some of the other forums and stick around a while.
  #17  
Old 11-10-2009, 12:00 AM
psychobunny psychobunny is online now
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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.
  #18  
Old 11-10-2009, 12:19 AM
Lord Il Palazzo Lord Il Palazzo is offline
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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?
  #19  
Old 11-10-2009, 12:36 AM
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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.
  #20  
Old 11-10-2009, 01:01 AM
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No questions from me either, just a warm welcome to what is, in my opinion, the best board on the 'net.
  #21  
Old 11-10-2009, 02:21 AM
T. Slothrop T. Slothrop is offline
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Welcome

Jon
  #22  
Old 11-10-2009, 02:30 AM
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blinkie, just wanted to say this is fascinating. And your sense of humor - "Me, I'm the silent type" - and your choice of username had me smiling.

To make it easier on the eyes for you, I've comped your subscription to the SDMB. As a subscribed member, you should not see any ads the next time you login.

My questions: Do you feel any different when you smile? Or is it the same feeling as before? How do you express emotion? Does your family easily sense emotion in your eyes or do you have to often write it out for them?

I hope our questions are not insensitive. We are just a very curious bunch.
  #23  
Old 11-10-2009, 02:58 AM
Viridiana Viridiana is offline
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This is fascinating, and I like you already, blinkie.

If it's not too hard to talk about, I'd love to know about those first days - like how your family was able to figure out you were in there and how you established communication at the very first.
  #24  
Old 11-10-2009, 09:49 AM
Scarlett67 Scarlett67 is offline
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To make it easier on the eyes for you, I've comped your subscription to the SDMB. As a subscribed member, you should not see any ads the next time you login.
Brilliant idea, xash. You rock!
  #25  
Old 11-10-2009, 10:30 AM
Fetchund Fetchund is offline
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Blinkie - did you have any kind of Medical Power of Attorney set up before your stroke? I'm assuming your wife made most of the decisions regarding your care - had you discussed this sort of situation in advance? (How long had you been married at the time?)
  #26  
Old 11-10-2009, 10:33 AM
Elendil's Heir Elendil's Heir is offline
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Welcome, blinkie. Some questions, if I may; please forgive any which are too nosey:

Do you ever have the blues, and how do you cope with it?

Do you like being read to, or do you prefer to do the reading yourself?

Did you ever see this film, and if so, what did you think of it? http://en.wikipedia.org/wiki/The_Div...utterfly_(film)

What has most surprised you about LIS? Has it, in any way, been a blessing?

Can you play any games, and if so, which do you enjoy?

Do you personally know anyone else with LIS? If so, would you tell us about that relationship?

Thank you for becoming part of the Dope community.
  #27  
Old 11-10-2009, 10:34 AM
Athena Athena is offline
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What do you think of the technology available to you (I'm thinking of the devices you use to surf the web/type/etc)? Do they work pretty well, or do you wish they were better? Is there any gadget you wish for that's not available?
  #28  
Old 11-10-2009, 11:08 AM
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blinkie, I am SO grateful to you for starting this thread. Thank you. I have a million questions, but I'll start with these:

Was yours a brain stem stroke and where in the brain stem was it located?

How long did it take you to become fully aware of the extent of your disability and how did you deal with that information?

Did you consider asking that life support be withdrawn at any time?

What did your family members do that helped you the most in the early days after your stroke?

What did they do that frustrated you?

Are you now on a ventilator and feeding tube?

Do you feel any physical sensation or pain?
  #29  
Old 11-10-2009, 01:42 PM
blinkie blinkie is offline
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I am overwhelmed that there is such a warm welcome and outpouring of interest. Thank you.

Now as to those questions:

dhkendall

My typing speed is about 10 words per minute, about what it was before the stroke. I wasn't a computer geek just the opposite, I could barely operate one, now my whole life revolves around it.

pschobunny

ALIS, the Association of Locked In Syndrome, which is based in France has 250 members. 90% of their membership is French. In New Jersey, where I live, I have made friends with 4 people who are Locked In. There are more of us now. I assume that is because, more of us are surving due to advances in medicine.

Well on insurance, I had insurance right up until I needed it. Cigna dropped me like a hot potato right in the middle of everything. As someone who is already on government insurance, I thank God for it everyday.

I spent nearly a year in various hospitals with tons of truly devastated people and the one thing they all had in common was, major fights and problems with their insurance companies. My docs spent as much time fighting insurance companies as they did treating me.

Before my stroke I owned a company in Florida that ran parking garages in Tampa, St. Pete and Orlando.

lord II Palazzo

For the most part you get back whatever is coming during the first year. After that you'd better get used to it because it ain't getting better.

Xash

I feel the same when I smile, I just don't look the same. I cry, laugh infact I have what's called "emotional liability" which makes me laugh and cry more than normal and for the damndest things. Now I'm considered partially Locked In. I have extremely limited vocalization.. I can "talk" with my family and friends very slowly. And although I only type 10 words a minute I can blink 15 or so.

Fetchund

I didn't and don't have a Medical Power of Attorney. My wife and I have discussed in detail exactly what I want done and my kids have all been briefed. I trust her, after all I heard her reaction when one of the doctors wanted to pull the plug. My wife and I have been together since we met at 13. We never really discussed anything like this.


Elindal's Heir
You're a curious one but since you're from Obama country I guess you get more time. He and I have been in the same room 3 times now. I'm an Obamabot to my core.

Yes I do get depressed from time to tim, but usually not for long. I'm sick but sane. I'd have to be a loon not to get down but on the other hand I 'm extremely lucky. And if I go into a dark hole, my family steps in and knocks me back into shape.

I "read" audiobooks so I can save my eyes for the computer. I don't blink automatically I have to command each blink and I tend to forget when I type or read.

Read the book but didn't see the movie. I'm upset I didn't get the part. I'm a true character actor. But I found the book to be hilarious having been through most of it. Some of my new friends knew Bauby and the hospital he was in.

Blessing? Hmmm. Well I wouldn't wish it on anyone but I have found out a lot. First the strength of my family, I just didn't know. Quite frankly I couldn't have handled what they're handling. Every little thing that I can enjoy I do to the nth degree. I lost my sense of smell for a year and then one day I smelled a lemon. It was so beautiful it reduced me to tears.

Games. Only simple ones like chess or scrabble. Fullscreen computer games like Civilization won't work with my on screen keyboard.

Yes I know several people who have LIS. Will tell you about some of them later. Now es tiempo por comer y therapy. Despues!
  #30  
Old 11-10-2009, 02:29 PM
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Dude, you're awesome. I hope you become a regular contributor on the board. I just love your attitude!!!
  #31  
Old 11-10-2009, 02:39 PM
EmAnJ EmAnJ is offline
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Dude, you're awesome. I hope you become a regular contributor on the board. I just love your attitude!!!
Me too, I really like this poster. His story is very interesting.
  #32  
Old 11-10-2009, 02:49 PM
Shirley Ujest Shirley Ujest is offline
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I could barely finish your details of LIS. They horrified me to my very core. That is nearly impossible to do.

I've been around devestating illnesses for 30 years now, all my brothers have Muscular Dystrophy, and have seen the slow descent into death genetics gave them. I wouldn't wish it upon anyone. (I wouldn't wish the insurance woes on my worst enemy. ) The depression is worse than the disease.

I admire your attitude to stay involved. Don't give up.

How old are your kids and how are they handling everything?

Are you at home or in a group home/long term care facility?
  #33  
Old 11-10-2009, 03:08 PM
Marley23 Marley23 is offline
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It's amazing that we can have you here with us, blinkie. Thank you for starting this thread.
  #34  
Old 11-10-2009, 03:57 PM
Elendil's Heir Elendil's Heir is offline
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Yes, thank you so much, and may God bless and keep you. I appreciate your candor in answering my (too) many questions.
  #35  
Old 11-10-2009, 04:00 PM
ToeJam ToeJam is offline
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I said it before and I'll say it again- Welcome to the Boards, and you really are an awesome sounding person- Stay cool, Blinkie.
  #36  
Old 11-10-2009, 04:59 PM
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Just piling on with wishes of welcome and appreciation for starting the thread. Reading your appreciation for the scent of a lemon is...moving.

And happy 27th, from a fellow Yankees fan! (whereabouts do you sit in the new stadium?)

WordMan/Scott
  #37  
Old 11-10-2009, 05:25 PM
blinkie blinkie is offline
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Athena

There are gadgets I would like to try.There are several Environmental Control units that would enable me to do just about anything but they tend to be pricy.

Koeeoaddi

It was a doozy of a brain stem stroke but that’s all I know about it. I don’t dwell on the medical stuff, no benefit.

It took at least a year. For the 1st 3 months I didn’t realize I was paralyzed. My mind still sends the commands for movement and in the beginning I actually thought I was moving a little, it sure felt that way, but,, Then I went through a stage where I thought I’d have to get around with a cane, wishful thinking.

I never considered having life support removed. I was only on a vent for a few days. So there was little life support. I did contemplate suicide. Might have done it to but when you can’t move anything it’s hard to off yourself. And even though I asked none of my family would help.

Someone was with me 16 hours a day for months. Only my family took the time to communicate with me. No medical people ever did.

Well what they did that frustrated me was to eat in front of me while I was on a peg tube. I had that in me for a year although I began eating pureed food after about 6 months.

I feel everything. Actually I’m hyper sensitive. I have no more pain than anyone else.

Shirley Ujest

I have 4 kids 32,28,26,23 and 5 grandkids. They handle it wonderfully. Much better than I would if I were them.
  #38  
Old 11-10-2009, 05:37 PM
Švejk Švejk is offline
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Quote:
Originally Posted by blinkie View Post
I lost my sense of smell for a year and then one day I smelled a lemon. It was so beautiful it reduced me to tears.
wow. I find this image just so incredibly moving and evocative. Thanks, blinkie, for sharing your experience with us - I really admire your strength and your sense of humor. I'm becoming an avid follower of this thread, and yesterday, you had me laughing out loud at my computer when you wrote 'me, I'm the silent type'.

Scarlett67 asked this before and I'll second her (?) question: can you describe your typical day?
  #39  
Old 11-10-2009, 06:07 PM
blinkie blinkie is offline
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Your not Croatian by some miracle, are you? The person I admire most is a Croatian by the name of Drasko Raul. He, like me has LIS, but he unlike me manages to maintain an upbeat atitude living with his wife, three small children and his mother-in-law, in a third floor 3 room walk up apartment.
Now that's courage.
  #40  
Old 11-10-2009, 06:23 PM
ElvisL1ves ElvisL1ves is offline
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No questions here either, just my thanks and good wishes along with everyone else's.
  #41  
Old 11-10-2009, 06:57 PM
BiblioCat BiblioCat is offline
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Welcome, blinkie. Thanks for sharing your story.
  #42  
Old 11-10-2009, 07:16 PM
Randolph Randolph is offline
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Yes, thank you for sharing. Fascinating, admirable.
  #43  
Old 11-10-2009, 07:41 PM
Leaper Leaper is offline
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According to the wiki entry, 90% of those with this syndrome die within four months. How do you think you've beat those odds?
  #44  
Old 11-10-2009, 08:39 PM
blinkie blinkie is offline
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Well to start with as to where I sit at Yankee Stadium, pretty much wherever I want. I bring my own seat. Seriously most venues have very good accessible accomodations.
The stadium is no exception but there parking is horrendous. I go to see them in Camden Yards as much as the stadium just because it's easier.
Leaper

I don't buy that statistic. Most people I know who have this were young and extremely fit. Maybe that is a true average if you include people who die almost immediately but if you get past the first month survival aveage is about 11 years.
Maybe it's time for me to start drinking again!
  #45  
Old 11-10-2009, 08:42 PM
Marley23 Marley23 is offline
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Maybe it's time for me to start drinking again!
If anybody ever earned it, it's probably you!
  #46  
Old 11-10-2009, 08:48 PM
Elendil's Heir Elendil's Heir is offline
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Could you describe a typical day?

Were, or are, your tastebuds affected?

When you dream, do you move around or even run?

Have you been tempted to try certain illicit substances that might give you the sensation of much more movement than you're actually capable of?

Last edited by Elendil's Heir; 11-10-2009 at 08:49 PM.
  #47  
Old 11-10-2009, 08:49 PM
Leaper Leaper is offline
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Most people I know who have this were young and extremely fit.
Hah! I knew there was a reason I'm so sedentary!

Seriously, this is interesting. Is there something about susceptibility to the particular kind of stroke? Or being "extremely fit" means being a little more likely to get a brain injury? Or maybe it doesn't mean anything, given the rarity of the syndrome; the wiki says that only "several thousand" each year survive the particular stroke, and I'm sure not all of them get the syndrome. Even factoring in other possible causes, that's not that common...
  #48  
Old 11-10-2009, 08:53 PM
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I'm so glad you started this thread. I don't have any questions at the moment that haven't already been asked. Don't feel obligated to respond rapidly or at length if you aren't up to it on a particular day - most people here are quite understanding about delays in response.
  #49  
Old 11-10-2009, 09:22 PM
psychobunny psychobunny is online now
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You say that you can eat pureed foods. Do you therefore have some tongue and palate movement? Can you move at all below the neck?

Also, I would venture a guess that the reason most of the people with LIS are young and relatively healthy is that those who arent don't survive this type of stroke.
  #50  
Old 11-10-2009, 11:57 PM
Mahaloth Mahaloth is offline
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I appreciate your participation a lot.

Are you terminal? Is your condition deteriorating?
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