He’s been on the dope as recently as 24 September '11. He did answer my PM on 13 July '11.
I spotted this item in the Globe and Mail (a Canadian national newspaper) today:
Listen to locked-in patients before withdrawing life support.
Blinkie, if you’re still with us, have you heard of the Lancet study that the item refers to? If so, what are your thoughts on the study? Heck, what are your thoughts, period? It sounds like some of these patients are so severely locked in that they cannot even communicate like you can–and that is a (to me, anyway) frightening thought if they cannot make their wishes known. Anyway, I’d be interested in hearing your take on this.
NICE TO KNOW YOU’RE MISSED Actually I have been reading the Dope but have had a problem with the software that allows me to write. Just got it up tonight.
Have to get off now because it’s bedtime. Getting me in is a 2 hour procedure, but I will be back tomorrow.
blinkie, you’ve been missed by people you’ve never met!
Early on when I decided to camp out at SDMB, I stumbled on this thread and read through the whole thing.
Welcome back, and hope to see you around the Dope!
-D/a
Yay, blinkie’s back! I was worried about possible bad news.
Would love to read your take on the study mentioned in Spoons’ post.
How on earth did I miss this thread?!?
What-everybody-else-has-said-better x 2.
Thank you. I hope you continue to share.
Yay! Welcome back, Blinkie!
Cool! Welcome back!
Spoons-I did read that study, it’s actually fairly old, but when I read it I was in a very bleak point in my life journey. I was pretty down when I read it and couldn’t get past the part where you were clenching and unclenching your fists.
That happened to me when I was in the ICU. I I vividly remember clenching and unclenching my fists and telling myself that at least I wasn’t paralyzed. It never dawned on me that I couldn’t open my eyes or turn my head to see my fists.
I’m extremely lucky when it comes to the whole end of life thing. I know my wife will know when it’s time to let me go. The whole idea of being frightened of dying doesn’t bother me. I’m more concerned with the steps getting there, pain, etc. rather than the act of dying.
CrypticC62-I’m pretty up to date on everything going on with Stem Cell. But it’s really not for me. I’m much older than people who survive this type of stroke… If, or should I say when, there is a breakthrough there are way too many people ahead of me who need and deserve treatment and that is how it should be. So I follow it, and advocate for it, for my many friends who need it. My opinion on the subject hasn’t changed, my awareess of how many people need help definitely has.
I am a late comer to this thread, and what an educational and emotional subject it is, thank you so much, blinkie, for sharing your experiences, I hope you continue to post here.
Reading the first three installments of your memoirs in teemings (and if anyone could tell me when/where I can find the fourth, would be grateful) I was appalled (although not that surprised) at the offhandedness and thoughtlessness of some of the nurses and aides you encountered. (I realise you also encountered staff who were competent, caring and made a real difference - just angers me that that is not the norm). Hopefully, your account will help to change attitudes.
Really appreciate your candidness and humour, please keep writing! I wish you and blinkie family all good things.
Good to see you’re back and able to post again,Blinkie!
Oh, I always love seeing this thread get a bumpity-bump. Cheers, blinkie, and I hope the upcoming holidays treat you and your family well!
Happy 2012, blinkie. Was searching for something else and found this thread again, so thought I would give it a bump. I love reading about you here and in your memoir. One of my favorite things about your story is how you and your wife had such a connection. She KNEW you were in there, she knew at times exactly what you were thinking, and she was a warrior for you. So amazing. The fact that your wife is a prize means you must be a pretty good sort yourself, of course. Hope all is well with you and yours.
Hi Blinkie… I’ve completely read this thread and wish I found it sooner. You have shed some light on issues that I never thought to ask my wife.
My wife at 42 had a brainstem hemorrhage back in September 2010. She spent 10 days in the Neuro ICU, 4 days in the hospital’s stepdown wing, 2 weeks in an acute care facility, and 3 months at a skilled nursing facility before they said I would have to take her home or pay privately for her care. During that time, noone ever mentioned or even considered LIS although the characteristics appeared to match. We continued to have a nurse, home health aide, and three different therapists come to our apartment twice a week for about 4 months after she was released home but not much had changed during that whole time. She is still on a trach and feeding tube but on her last hospital stay, they said she no longer needed any medications or oxygen.
Since then, I have been completely on my own caring for my wife and was surprised to read your wife is being paid to take care of you through a program in New Jersey. Our social worker never mentioned anything like that so maybe it doesn’t exist in Chicago but could you explain more about that program?
Wonderone the program I’m on is called “Ticket to Work” It is a federal program that is active in about 1/2 the states. I’m pretty sure Illinois is active. You have to work from home, which I do, earn $200 a month, which now I do. There are ways around that $200 or really working in general.
The State pays somone and it can be anyone 40 hours a week to help care for me. It’s not much, $12.00 an hour but it gets us through. If you want more detail send me a PM and I’ll tell you how to qualify.
Hi, blinkie - glad to see you back again. Don’t be such a stranger, eh?
Thanks, if Romney wins our election perhaps we’ll be neighbors. I might move to Canada.
Did the Teemings postings end after part three?
Thank you for sharing your story, it’s fascinating and thought provoking.
After Part 3 I haven’t seen Teeming’s again, don’t know what happened to it.
The editor’s life got really busy again.