Welcome
Jon
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.
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.
Brilliant idea, xash. You rock!
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?)
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? The Diving Bell and the Butterfly (film) - Wikipedia
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.
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?
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Did you consider asking that life support be withdrawn at any time?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?
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!
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.
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?
It’s amazing that we can have you here with us, blinkie. Thank you for starting this thread.
Yes, thank you so much, and may God bless and keep you. I appreciate your candor in answering my (too) many questions.
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.
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
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.
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?
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.
No questions here either, just my thanks and good wishes along with everyone else’s.