# RIP blinkie (Ask the guy with Locked In Syndrome) **URL:** \ **Category:** Miscellaneous and Personal Stuff I Must Share\ **Created:** [November 10, 2009, 1:29am UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981 "2009-11-10T01:29:43Z")\ **Posts on this page:** 20\ **Page:** 11
**Author:** ![koeeoaddi](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/koeeoaddi/32/408_2.png) [@koeeoaddi](https://boards.straightdope.com/u/koeeoaddi)\ **Post date:** [November 23, 2009, 2:12am UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/201 "2009-11-23T02:12:35Z")
psssssssssssssssst… **blinkie** , **twicks** is a she. (I do like a thread with symmetry.) 🙂 ---
**Author:** ![blinkie](https://avatars.discourse-cdn.com/v4/letter/b/43a26b/32.png) [@blinkie](https://boards.straightdope.com/u/blinkie)\ **Post date:** [November 23, 2009, 2:26am UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/202 "2009-11-23T02:26:42Z")
Oh God! Mrs. Blinkie has a jealous streak. :D:D ---
**Author:** ![Marley23](https://avatars.discourse-cdn.com/v4/letter/m/45deac/32.png) [@Marley23](https://boards.straightdope.com/u/Marley23)\ **Post date:** [November 23, 2009, 4:42am UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/203 "2009-11-23T04:42:08Z")
**twickster** is a she. It’s easier to remain in her good graces if you remember that. 😉 ---
**Author:** ![blinkie](https://avatars.discourse-cdn.com/v4/letter/b/43a26b/32.png) [@blinkie](https://boards.straightdope.com/u/blinkie)\ **Post date:** [November 23, 2009, 10:23pm UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/204 "2009-11-23T22:23:00Z")
Hey Dopester’s, I’m on [ABC.com](http://ABC.com)! ---
**Author:** ![Tastes\_of\_Chocolate](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/tastes_of_chocolate/32/3232_2.png) [@Tastes\_of\_Chocolate](https://boards.straightdope.com/u/Tastes_of_Chocolate)\ **Post date:** [November 23, 2009, 11:13pm UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/205 "2009-11-23T23:13:02Z")
> [@blinkie](#): > > Hey Dopester’s, I’m on [ABC.com](http://ABC.com)! You’re one of the finalist for Dancing with the Stars? Cool!! Sorry, I think your sense of humor must be contagious. That was the first thing I saw, when I went to [ABC.com](http://ABC.com). I’ve been reading your thread here, and let me add to the “Welcome to the Dope” pile on. ---
**Author:** ![blinkie](https://avatars.discourse-cdn.com/v4/letter/b/43a26b/32.png) [@blinkie](https://boards.straightdope.com/u/blinkie)\ **Post date:** [November 23, 2009, 11:21pm UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/206 "2009-11-23T23:21:35Z")
Actually I’m background for a story on Good Morning America but not sure if it will air tomorrow. ---
**Author:** ![Loopus](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/loopus/32/15343_2.png) [@Loopus](https://boards.straightdope.com/u/Loopus)\ **Post date:** [November 24, 2009, 12:24am UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/207 "2009-11-24T00:24:57Z")
I haven’t posted on this thread before now, but I’ve been following it with interest since the beginning. [Here’s the ABC story **blinkie** was talking about](http://abcnews.go.com/Health/story?id=2835149&page=1). I was sure it had to be about him when I read: > [@](#): > > Now he calls himself “a thinking vegetable” as a joke. 😃 ---
**Author:** ![blinkie](https://avatars.discourse-cdn.com/v4/letter/b/43a26b/32.png) [@blinkie](https://boards.straightdope.com/u/blinkie)\ **Post date:** [November 24, 2009, 1:38am UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/208 "2009-11-24T01:38:56Z")
Loopus I was on that one but I am supposed to be on GMA tomorrow. They’re doing a story about a man in Germany who was unable to communicate for 23 years before a doctor tested him and found he had been completely cognizant the whole time. ABC came my house today for an interview today. So Mrs. Blinkie and I may get a minute of facetime tomorrow. ---
**Author:** ![gaffa](https://avatars.discourse-cdn.com/v4/letter/g/e68b1a/32.png) [@gaffa](https://boards.straightdope.com/u/gaffa)\ **Post date:** [November 24, 2009, 4:41am UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/209 "2009-11-24T04:41:20Z")
If I may ask the obvious question: Did ABC find you from this thread? ---
**Author:** ![Elendil\_s\_Heir](https://avatars.discourse-cdn.com/v4/letter/e/7cd45c/32.png) [@Elendil\_s\_Heir](https://boards.straightdope.com/u/Elendil_s_Heir)\ **Post date:** [November 24, 2009, 5:11am UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/210 "2009-11-24T05:11:49Z")
Here’s another story on the German (Belgian?) guy: [News, Politics, Sports, Mail & Latest Headlines - AOL.com](http://news.aol.com/article/ron-houben-says-he-heard-everything-for/780187) ---
**Author:** ![Equipoise](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/equipoise/32/151_2.png) [@Equipoise](https://boards.straightdope.com/u/Equipoise)\ **Post date:** [November 24, 2009, 11:35am UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/211 "2009-11-24T11:35:02Z")
> [@blinkie](#): > > Hey Dopester’s, I’m on [ABC.com](http://ABC.com)! Good article! Thanks for the link Loopus. I liked this part, it definitely surprised me: > [@](#): > > In the future, there may be more help for patients like Glenda from a familiar little pill: Viagra. > > Dr. Michael Chopp, a neuroscientist at Henry Ford Hospital in Detroit, has found that Viagra helps the brain make new nerve cells. His experiments are encouraging, showing that rats can recover from strokes after taking the drug. > > “I think we are poised to revolutionize the treatment of neurologic disease,” he said. **blinkie** , have you tried Viagra (for medical research, of course, I’m not meaning to pry into your sex life)? Are there any clinical trials going on that you know about? Have you written to Rom? What did you think about the [Terri Schiavo](http://en.wikipedia.org/wiki/Terry_Schiavo) case when it was ongoing? Right-wingers are sure bringing her up now. ---
**Author:** ![cmyk](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/cmyk/32/3353_2.png) [@cmyk](https://boards.straightdope.com/u/cmyk)\ **Post date:** [November 24, 2009, 3:34pm UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/212 "2009-11-24T15:34:40Z")
I’ve just caught up myself to this thread. You’re pretty amazing **Blinkie,** everything you and your family have had to endure from suffering to acceptance. I don’t think anybody can truly imagine the trials you guys have been through. It’s obvious you’re very loved, and give it back. I do have some questions: Before you were discovered, were there times anybody caused you pain, thinking you were vegetative/unconscious? Like a nurse or caretaker handling you way more roughly than they would’ve had they known you were awake? Were there any times you were in agony for extended periods, and couldn’t communicate for help? I have a low threshold for pain (I’m a big baby), so I’m horrified by the thought of someone causing me pain for whatever reason, and I can’t tell them _I can feel that (!)_. Also, I can’t help but think of stories like Hitchcock Presents’ **Breakdown,** or Stephen King’s **Autopsy Room Four** when I hear about conditions like yours. ---
**Author:** ![Brynda](https://avatars.discourse-cdn.com/v4/letter/b/e79b87/32.png) [@Brynda](https://boards.straightdope.com/u/Brynda)\ **Post date:** [November 24, 2009, 4:01pm UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/213 "2009-11-24T16:01:37Z")
**blinkie** , that is you in the article **Loopus** linked to, right? This thread has been fascinating. I love how the internet lets us meet people we wouldn’t ordinarily meet. ---
**Author:** ![blinkie](https://avatars.discourse-cdn.com/v4/letter/b/43a26b/32.png) [@blinkie](https://boards.straightdope.com/u/blinkie)\ **Post date:** [November 24, 2009, 4:04pm UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/214 "2009-11-24T16:04:08Z")
Gaffa No they didn’t find me from this thread. I was on a couple of years ago when they were doing another story about LIS. They called us out of the blue yesterday to ask if they could do follow up. When I wrote, “Hey Dopester’s I’m on ABC.” They were filming us. Equipoise I only found out about him yesterday afternoon. I don’t have his email yet, ABC is supposed to get it for me. He does “speak” in 4 languages but I’m not sure if English is one of them. Haven’t tried Viagra, the medical stuff on it’s effectiveness is pretty sketchy but I do get 4-5 emails a day from folks trying to sell it to me as a cure all. Terry Schiavo was hard for me to watch because she was brain dead. I know people are looking for miracles but my sympathies were with the husband. If anything I would advise getting a living will immediately putting ultimate decisions in the person you trust the most. Cmyk There were definitely people who treated me more roughly, even cruelly, because they thought I wasn’t there but they were the exception not the rule. Agony for extended periods? Well if hours count then yes, almost every night. Only in the beginning though. ---
**Author:** ![koeeoaddi](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/koeeoaddi/32/408_2.png) [@koeeoaddi](https://boards.straightdope.com/u/koeeoaddi)\ **Post date:** [November 24, 2009, 4:27pm UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/215 "2009-11-24T16:27:14Z")
> [@blinkie](#): > > Agony for extended periods? Well if hours count then yes, almost every night. Only in the beginning though. **blinkie** , could you expand just a little on why you were in pain at night? Do you think was there anything your family or medical team could have done, if they had known, to alleviate your pain? Also, are you still turned every two hours? If so, how do you get any sleep? > [@blinkie](#): > > When I wrote, “Hey Dopester’s I’m on ABC.” They were filming us. Awesome! ---
**Author:** ![gaffa](https://avatars.discourse-cdn.com/v4/letter/g/e68b1a/32.png) [@gaffa](https://boards.straightdope.com/u/gaffa)\ **Post date:** [November 24, 2009, 5:33pm UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/216 "2009-11-24T17:33:15Z")
I just checked my recording of the bit from Good Morning America. That was a good, solid twenty seconds there! I thought Dr. Besser gave a pretty decent overview of the issues. And it’s nice to put a face to yourself and your lovely wife. ---
**Author:** ![FlightlessBird](https://avatars.discourse-cdn.com/v4/letter/f/cdc98d/32.png) [@FlightlessBird](https://boards.straightdope.com/u/FlightlessBird)\ **Post date:** [November 24, 2009, 6:55pm UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/217 "2009-11-24T18:55:14Z")
Thought I’d jump in with the link to the [GMA Story (with video)](http://abcnews.go.com/GMA/OnCall/doctors-find-vegetative-paralyzed-man-awake-23-years/story?id=9159555). **blinkie** ’s got a better monitor then me. I really need to upgrade mine 🙂 This thread is really amazing, and will go on my list of why The Dope is the best board around. They say the best way to keep your mind active is to pick up new skills and activities. Do you have any dreams that you want to explore? Learning new languages? Picking up a new sport to watch (I’ve always wanted to learn how Cricket is played and your situation is the only way I’d have the patience)? Or maybe I’m off base and your mind is in no danger of getting tired. I can’t imagine grandkids are anything but an adventure. Not sure about their ages from your posts, but surely they (soon will?) drag you to unwatchable movies like Twilight (girls) or 2012 (boys). Thanks for your inspiration and keep on posting. BTW in the ABC clip, did **Mrs blinkie** go on to say the next line you said about the velocoraptor? I can see why it’d get cut, but I thought it was funny. ---
**Author:** ![gaffa](https://avatars.discourse-cdn.com/v4/letter/g/e68b1a/32.png) [@gaffa](https://boards.straightdope.com/u/gaffa)\ **Post date:** [November 24, 2009, 7:28pm UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/218 "2009-11-24T19:28:51Z")
> [@FlightlessBird](#): > > Thought I’d jump in with the link to the [GMA Story (with video)](http://abcnews.go.com/GMA/OnCall/doctors-find-vegetative-paralyzed-man-awake-23-years/story?id=9159555). > **blinkie** ’s got a better monitor then me. I really need to upgrade mine 🙂 Thanks for the link. The written story has additional information not included in the story that aired. ---
**Author:** ![blinkie](https://avatars.discourse-cdn.com/v4/letter/b/43a26b/32.png) [@blinkie](https://boards.straightdope.com/u/blinkie)\ **Post date:** [November 24, 2009, 9:03pm UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/219 "2009-11-24T21:03:19Z")
Koeeoaddi When I said in the beginning, I wasn’t really as accurate as I should have been. In the first hospital I was in, and there were a few, my experiences with staff were fine. No one went out of their way to cause me pain. Frustration then was limited to people talking in front of me like I couldn’t understand. Subsequent to that I spent time in a nursing home, developed a MRSA infection and was admitted to another hospital. In the nursing home, I’LL NEVER GO TO ONE AGAIN, and in the second hospital I received poor care. IV’s were torn out of my arm and my family was told that I had done it. To the point about me being turned every 2 hours to prevent bedsores. They did that in the hospital but we don’t do that at home. Most of the time I sleep right through. Pressure sores have never been a problem at home. I got them but only in the hospital. Gaffa They filmed us for over 2 hours for that 20 seconds and I’m getting tired of telling Mrs. Blinkie that contrary to her opinion she didn’t look fat on TV. ---
**Author:** ![Marley23](https://avatars.discourse-cdn.com/v4/letter/m/45deac/32.png) [@Marley23](https://boards.straightdope.com/u/Marley23)\ **Post date:** [November 24, 2009, 9:05pm UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/220 "2009-11-24T21:05:30Z")
> [@blinkie](#): > > I’m getting tired of telling Mrs. Blinkie that contrary to her opinion she didn’t look fat on TV. Maybe you can just make a macro for that. 😃 [Previous page](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981.md?page=10) [Next page](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981.md?page=12)