It just occurred to me that this thread, in particular, is the best example I’ve ever seen of the absolute value to society of personal computers and the Internet. I’m 49, and remember a world where we dreamed of small computers that were cheap enough that individuals could own them (the first computer I had contact with was a big IBM, the second an Altair). And, back then, most people couldn’t understand what an individual could possibly want a computer for - and honestly, we didn’t have very many good answers why.
Not even the most visionary computer pioneers predicted that networking and personal computers would come together to enable a person with Locked-In Syndrome to communicate with people all over the world, share his story, have a social life and participate in politics.
No matter what else, this is proof that the world of today is a far better place than yesterday.
koeeoaddi had posted about his brother in another thread, and I had made the suggestion that he put headphones on Watcher of the Skies and play his favorite music (in this case, Genesis because he’s named after a Genesis song). Did your family do that in the early days? Or play your favorite music in other ways? (koeeoaddi, just out of curiosity, have you done that yet?)
Edit to add, personally, I would want that done. Just slap on some headphones and crank up the ipod with all my favorite music, and the soundtracks to my favorite films.
blinkie, when you have a cold can you cough ? ( My father in law is paralyzed from the chest down and his coughing is very weak and not productive at all.)
blinkie, I’m not sure if the person who contacted you is one of my family members, but it wouldn’t surprise me. I have shared this thread with most of them.
Equipoise, yes we have played music for him, though not with headphones as he seemed too fragile and headphones too invasive. Remember, he’s a captive audience and music, which is his passion, can also be a memory minefield. Perhaps when he stabilizes he will be more interested in listening to it again.
Can I cough? That’s a yes and no question for me. I am not able to cough on command, like if someone asks me to. But my gag reflex works well and so I have learned how to initiate a cough. I don’t recommend that any sane person try this but I drink a little, Sambucca works best for me, I can cough up a storm. My family says I go from red to purple and I’ll probably choke myself to death one day but according to the doctors that should have happened already anyway.
Equipoise
Although someone with LIS can hear and enjoy music low volume works best. At first there is no tolerance for loud noises.
Gaffa
The world sure has changed for people like me. I have Locked In friends all over the world in. France, England, Malta, South Africa, you name it. We don’t talk that often but if any of us gets down we’re always there for each other. And of course THIS new world.
MoodIndigo1
My family is exceptional. I was proud of them before. Now I’m astounded by them. Blinkie’s kid was in Montreal a few weeks ago and went to a restaurant run by blind people, where everything is served in total darkness. Do you know it? I just got a mental picture of me driving through it.
Spoons and Celyn
I just want to thank everyone again for showing such an interest and in showing me such a warm welcome. It’s nice to be here. I hadn’t heard of the site but ALL my kid’s had. “Dad’s on the Dope!” has been a common reaction around here.
It’s called O.Noir, and I haven’t been there yet. I read about it, the concept originated in France. My stepson and his wife ate at O.Noir one evening with friends and told us a bit about the experience. If you make it to Montreal, we can go with you, though you mention your sensitivity to loud noises, and it is said to be very noisy on week-end evenings.
He was just diagnosed in the past 2 weeks. Am trying to come to grips with the prospects. If he could communicate like you do, that would be great.
Since you live at home, could you share your caregiver arrangements? My friend’s family is trying to decide his placement when he leaves the hospital. Also, did you receive any rehab after your LIS was diagnosed?
I guess LIS is not as rare as I thought. You are the third person to contact me who has someone who has been diagnosed with LIS. First know LIS cannot be diagnosed after 2 weeks. Is this the case here?
I did receive rehab but not at first. When I was discharged from the hospital no rehab would take me. I was on a trach and peg tube. I was in a sub-acute facility for three months before my family could convince a rehab hospital to admit me.
My wife is my caregiver. It’s kind of a long story, I think it’s in the book but when I was discharged from rehab Mrs. Blinkie and I rented a small apartment near the rehab hospital and hired one of the Aides p/t to help care for me. It was a year before we found the accessible house we live in now. Goodbye Aides, hello suburban living.
I do know of LIS patients who live independently but almost all of them live outside of the USA where “government run health care” provides levels of assistance far superior than anything here.
Send me a message with a little more detail about him (age, location, date of stroke, present condition and I can tell you a little more about what to expect.
MoodIndigo1
Be careful I might just come up and take you up on that offer. The dessert list might be worth the trip but the prospect of Mrs. Blinkie trying to feed me in total darkness might be a little too hazardous for me.
Me again, blinkie, with a couple of new questions.
In the early days following your stroke were you confused, or were your thought processes altered in such a way as to make it difficult for your family members to understand what you were trying to tell them? You seem absolutely clear and rational now and I was just wondering if that was the case in the weeks following your stroke.
Were you ever evaluated for damage to the higher functions of your brain? Reasoning, perception and so on?
You mentioned seeing double, how long did that last?
Immediately after the stroke I wasn’t confused although I must have seemed so. The best way I can describe it was that I felt like I had just lost a heavyweight fight. I ached, felt swollen all over and was too tired to care about anything. I was asleep most of the time but was clear for moments at a time. Clear in the sense that I heard everything distinctly. I can still remember listening to CNN while I was in critical care. I am sure that my family had trouble communicating with me. At first it was difficult to even control blinking. Even that was a HUGE effort.
Was I totally rational I’m not really sure but I doubt it. I used to have them leave a TV on all the time so I could have company and something to look at all the time. Trouble is I was stuck on one channel until someone from the family came and changed the channel for me. My daughter tells a story about one day showing up and finding me laughing at a Jerry Springer episode. That doesn’t sound too rational to me.
I was tested very early on, while I was in a nursing home and I’m sure it didn’t go well. For one thing I was seeing double for at least 4 months and any visual testing was extremely frustrating.
I can think clearly now but I know I have suffered brain damage. Problem solving has suffered. Or maybe I’m just making excuses for getting older.
Regarding the memoir, have you thought about trying to get it published? I haven’t read this whole thread, but I would imagine someone in your position could always use some money to pay for care and all. It seems to me like the sort of thing that could actually sell, since there are lots of books out there about people dealing with unique disabilities and things like that.
I would be careful with posting it online, though. I don’t know about that Teemings site, but I believe that things people post here on this board become the property of the Chicago Reader. You don’t want to post your story in the wrong place and lose your rights to it.
The only problem with that, is that if he did earn over a certain amount (which is fairly small, if I recall) he could lose his eligibility for Federal disability. Long term, that might generate more problems than it solves.
About getting published, from your lips to God’s ears. At this point I’ll leave all that to my editor, Twickster. Maybe he can cut me a sweet movie deal or maybe I could serialize, Blinkie goes to the Beach, Blinkie goes to Washington, Blinkie goes to Broadway.
I did do a TV bit. I was on ABC’s Medical Mysteries. Who knows? Seriously, once upon a time, long ago I had money. Though it was nice, I truly don’t miss it now.
