# 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:** 3
**Author:** ![BiblioCat](https://avatars.discourse-cdn.com/v4/letter/b/ed8c4c/32.png) [@BiblioCat](https://boards.straightdope.com/u/BiblioCat)\ **Post date:** [November 10, 2009, 11:57pm UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/41 "2009-11-10T23:57:44Z")
Welcome, **blinkie**. Thanks for sharing your story. ---
**Author:** ![Randolph](https://avatars.discourse-cdn.com/v4/letter/r/e5b9ba/32.png) [@Randolph](https://boards.straightdope.com/u/Randolph)\ **Post date:** [November 11, 2009, 12:16am UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/42 "2009-11-11T00:16:38Z")
Yes, thank you for sharing. Fascinating, admirable. ---
**Author:** ![Leaper](https://avatars.discourse-cdn.com/v4/letter/l/4bbf92/32.png) [@Leaper](https://boards.straightdope.com/u/Leaper)\ **Post date:** [November 11, 2009, 12:41am UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/43 "2009-11-11T00:41:04Z")
According to the wiki entry, 90% of those with this syndrome die within four months. How do you think you’ve beat those odds? ---
**Author:** ![blinkie](https://avatars.discourse-cdn.com/v4/letter/b/43a26b/32.png) [@blinkie](https://boards.straightdope.com/u/blinkie)\ **Post date:** [November 11, 2009, 1:39am UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/44 "2009-11-11T01:39:26Z")
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! ---
**Author:** ![Marley23](https://avatars.discourse-cdn.com/v4/letter/m/45deac/32.png) [@Marley23](https://boards.straightdope.com/u/Marley23)\ **Post date:** [November 11, 2009, 1:42am UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/45 "2009-11-11T01:42:13Z")
> [@blinkie](#): > > Maybe it’s time for me to start drinking again! If anybody ever earned it, it’s probably you! ---
**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 11, 2009, 1:48am UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/46 "2009-11-11T01:48:28Z")
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? ---
**Author:** ![Leaper](https://avatars.discourse-cdn.com/v4/letter/l/4bbf92/32.png) [@Leaper](https://boards.straightdope.com/u/Leaper)\ **Post date:** [November 11, 2009, 1:49am UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/47 "2009-11-11T01:49:39Z")
> [@blinkie](#): > > 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… ---
**Author:** ![Broomstick](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/broomstick/32/246_2.png) [@Broomstick](https://boards.straightdope.com/u/Broomstick)\ **Post date:** [November 11, 2009, 1:53am UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/48 "2009-11-11T01:53:21Z")
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. ---
**Author:** ![psychobunny](https://avatars.discourse-cdn.com/v4/letter/p/54ee81/32.png) [@psychobunny](https://boards.straightdope.com/u/psychobunny)\ **Post date:** [November 11, 2009, 2:22am UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/49 "2009-11-11T02:22:46Z")
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. ---
**Author:** ![Mahaloth](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/mahaloth/32/1079_2.png) [@Mahaloth](https://boards.straightdope.com/u/Mahaloth)\ **Post date:** [November 11, 2009, 4:57am UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/50 "2009-11-11T04:57:30Z")
I appreciate your participation a lot. Are you terminal? Is your condition deteriorating? ---
**Author:** ![lieu](https://avatars.discourse-cdn.com/v4/letter/l/c2a13f/32.png) [@lieu](https://boards.straightdope.com/u/lieu)\ **Post date:** [November 11, 2009, 1:05pm UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/51 "2009-11-11T13:05:03Z")
You’re a real inspiration, **blinkie** , what with the way you handle a difficult situation with absolute class. I’m joining the throngs saying it is indeed a pleasure to have you as a valued contributor here. ---
**Author:** ![gaffa](https://avatars.discourse-cdn.com/v4/letter/g/e68b1a/32.png) [@gaffa](https://boards.straightdope.com/u/gaffa)\ **Post date:** [November 11, 2009, 5:07pm UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/52 "2009-11-11T17:07:31Z")
Feel free to ignore this, but if you wish to answer it might prove helpful or inspiring - Do you still have a sex life? I ask because my brother-in-law has ALS which has progressed to the point where he can no longer walk. My sister hasn’t been laid in a year. She loves her husband desperately, and would be more than happy to accommodate his illness in any way, but he has refused to try any sort of sexual contact. Again, if this is too personal, feel free to ignore it. Thanks for starting this discussion. ---
**Author:** ![blinkie](https://avatars.discourse-cdn.com/v4/letter/b/43a26b/32.png) [@blinkie](https://boards.straightdope.com/u/blinkie)\ **Post date:** [November 11, 2009, 5:18pm UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/53 "2009-11-11T17:18:25Z")
Mahaloth We’re all terminal, some just hurry the process along. I’m not really deteriating, actually quite healthy. Certainly healthier than before the stroke . I take better care of myself now. Also, I see I’m not the only quadriplegic on the list. There is at least one person here who belongs to a paralysis support group I’m in. Not sure if he’s out of the closet here though, or just walking around in a virtual world so I won’t out him. Pschobunny Below my neck I can move one finger a little, nothing else. But I can now eat more than pureed food. I can eat everything, although now I’m vegan by choice. I do have some tongue and palate movement. As silly as it sounds I spend 2-3 hours a day doing mouth exercises. Elindel’s Heir Yes my taste buds were changed. They are way more intense. Flavors are much sharper now. I try to avoid spicy foods as I react violently to them. Dreams are full technicolor events. I walk, run, ski. Sometimes I am in a wheelchair, other times no. Last night I went hang gliding in the chair, but 2 nights ago I left it home when I went mountain climbing. I’m on plenty of drugs already, about 15 pills a day, so I never considered illicit stuff. Certainly not against it, did some in my prior life but now if I choke down one rum and coke I get one helluva buzz. My day starts at six sharp. I am lifted from bed by what can only described as a small crane, deposited into a bath wheelchair, after doing what everyone does in there, I shower. That for me is like going through a carwash with the windows open. Then it’s back to bed to be dressed and stretched out (think of being drawn and quartered), then craned into the chair. This is a 2-3 hour procedure. Then exercises , mouth, for a couple of hours after breakfast, and then weather permitting outside for the better part of the day. About 4 I go online for 3 or 4 hours. Dinner, a little TV. Jay Leno and I are in bed by 10. I take those 15 pills and see how long I can last before drifting off. :smack: ---
**Author:** ![Marley23](https://avatars.discourse-cdn.com/v4/letter/m/45deac/32.png) [@Marley23](https://boards.straightdope.com/u/Marley23)\ **Post date:** [November 11, 2009, 5:24pm UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/54 "2009-11-11T17:24:29Z")
Mind if I ask what the pills are for? I was going to ask if they are for pain, but that wouldn’t make much sense - are they supposed to help you survive Leno? 😉 ---
**Author:** ![blinkie](https://avatars.discourse-cdn.com/v4/letter/b/43a26b/32.png) [@blinkie](https://boards.straightdope.com/u/blinkie)\ **Post date:** [November 11, 2009, 5:33pm UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/55 "2009-11-11T17:33:21Z")
Gaffa in one word yes. I’m not sure if this is possible with ALS. But to be honest I get a tremendous amount of joy just having my wife snuggle up next to me.EVERY morning from 5-6 ---
**Author:** ![Shot\_From\_Guns](https://avatars.discourse-cdn.com/v4/letter/s/ccd318/32.png) [@Shot\_From\_Guns](https://boards.straightdope.com/u/Shot_From_Guns)\ **Post date:** [November 11, 2009, 5:37pm UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/56 "2009-11-11T17:37:48Z")
> [@blinkie](#): > > Jay Leno and I are in bed by 10. Kinky… 😃 ---
**Author:** ![blinkie](https://avatars.discourse-cdn.com/v4/letter/b/43a26b/32.png) [@blinkie](https://boards.straightdope.com/u/blinkie)\ **Post date:** [November 11, 2009, 5:39pm UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/57 "2009-11-11T17:39:53Z")
Pills for blood pressure, choleseral, vitamins, spasticity, fibre, general aches and pains, antidepresants (I stupidly resisted this for years, sleeping pills to name a few. ---
**Author:** ![gaffa](https://avatars.discourse-cdn.com/v4/letter/g/e68b1a/32.png) [@gaffa](https://boards.straightdope.com/u/gaffa)\ **Post date:** [November 11, 2009, 6:01pm UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/58 "2009-11-11T18:01:30Z")
> [@blinkie](#): > > Jay Leno and I are in bed by 10. Does Mavis know? ---
**Author:** ![gaffa](https://avatars.discourse-cdn.com/v4/letter/g/e68b1a/32.png) [@gaffa](https://boards.straightdope.com/u/gaffa)\ **Post date:** [November 11, 2009, 6:07pm UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/59 "2009-11-11T18:07:05Z")
> [@blinkie](#): > > Gaffa in one word yes. I’m not sure if this is possible with ALS. But to be honest I get a tremendous amount of joy just having my wife snuggle up next to me.EVERY morning from 5-6 Glad to hear it. From what I read on this thread, the support of your family and especially your wife appears to be the number one quality of life factor for you. You’re a very lucky man. From what I understand, it is possible with ALS, at least from what I’ve read on the ALS support board I found for my less-than-computer-savvy sister. ---
**Author:** ![Svejk\_1](https://avatars.discourse-cdn.com/v4/letter/s/ea666f/32.png) [@Svejk\_1](https://boards.straightdope.com/u/Svejk_1)\ **Post date:** [November 11, 2009, 6:27pm UTC](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981/60 "2009-11-11T18:27:26Z")
> [@blinkie](#): > > 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. I realized today that this might could be directed at me - no, I’m not Croatian, and, thankfully, I also don’t have LIS. **Švejk** is the name of a character from a Czech novel that I’m very fond of. Another thing that occurred to me some time yesterday to ask you is whether you find that people take you less seriously now that you are locked in, and treat you as if you have a mental problem in addition to a physical one. [Previous page](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981.md?page=2) [Next page](https://boards.straightdope.com/t/rip-blinkie-ask-the-guy-with-locked-in-syndrome/516981.md?page=4)