Life on the inside as a ‘locked-in’ patient
theguardian.com
Life on the inside as a ‘locked-in’ patient
1–10 of 52 posts
Re: Life on the inside as a ‘locked-in’ patient
#2This year just keeps giving me more and more reasons to _do_ things and stop waiting for things.
Re: Life on the inside as a ‘locked-in’ patient
#3This year just keeps giving me more and more reasons to _do_ things and stop waiting for things.
Yes but make sure one of those things isn’t heroin
Re: Life on the inside as a ‘locked-in’ patient
#4Interaction of his condition with Covid is fascinating towards the end of the article. We understand so little of the human body.
Re: Life on the inside as a ‘locked-in’ patient
#5Quite an astonishing article. I wonder what role positive thinking really plays in these recoveries... According to Jacob, the man the piece profiled, it's the only reason he's living today.
In the YouTube video linked to from the article, it's impressive to see how well he speaks: https://www.youtube.com/watch?v=5FBLtjVHZ00. You can leave him a comment, and I'm sure he'll respond. It looks like he responds to every comment on his videos, and more human connection in these strange times can't hurt :).
Re: Life on the inside as a ‘locked-in’ patient
#6I've been coming to terms with both my parents dying this year, and one of the eye opening things is how much worse it could have been.
Seeking a bit of comfort, I went to different friends who I knew had lost a parent to speak about the experience.
I hadn't expected it, but a couple of friends had truly traumatic losses. One of them was due to locked-in syndrome.
After a stroke, my friend's dad had this happen to him. It really changes what you feel about death. Initially, there's the fighting stage. You want to do everything for your loved one to survive. I wanted my dad to eat better and exercise. He wanted just for his dad to wake up.
He'd get ill often, and the doctors would give him antibiotics and whatever therapy was needed. It lasted for years, no wake up. Time passed, numerous visits came and went. Eventually the family decided it might be better to let the next illness end it, so they agreed with the medical staff on what to do, and made their final thoughts.
Incredibly, the next infection took years to come. In a twisted irony, the family spent years hoping for improvement, then years hoping for the end.
Weirdly this wasn't even the worst story of the ones I collected. It's just a reminder that things could have been much worse. We tend to not think about death too much, it's grim and challenges our ideas about who we are and what the good life is.
Re: Life on the inside as a ‘locked-in’ patient
#7This year just keeps giving me more and more reasons to _do_ things and stop waiting for things.
Yes but make sure one of those things isn’t heroin
Please let adults evaluate the risks and make up their own minds.
Otherwise it sounds like MPTP https://www.acsh.org/news/2017/01/12/frozen-addicts-garage-d... but that kills dopamine producing cells, so did he regrow these?
Re: Life on the inside as a ‘locked-in’ patient
#8I've been coming to terms with both my parents dying this year, and one of the eye opening things is how much worse it could have been. Seeking a bit of comfort, I went to different friends who I knew had lost a parent to speak about the experience. I hadn't expected it, but a couple of friends had truly traumatic losses. One of them was due to locked-in syndrome. After a stroke, my friend's dad had this happen to hi…
Having seen a similar case, this is truly a traumatic ordeal for the patient’s family (and possibly the patient too, though we don’t know how they feel in that state).
Keeping such person alive is a huge project. A team of experts is needed, not to treat the patient, but to help prevent his/her situation getting worse. I mean, you need several people just to move the patient.
Eventually, the support wears down and the family goes from the help mode to, well, let the next infection take its course.
It’s a dead end and I don’t wish that for my worst enemy.
Brain diseases are horrible. I would take cancer anytime!
Re: Life on the inside as a ‘locked-in’ patient
#9I sympathize with Ellen. She knew she could not abandon him at his time of need, but when he started getting better, she knew her job was done and it would not be unfair if she moved on. She sounds like a good person. I would like to know more about the conversations that went on around their getting distant, and perhaps it was all in silent actions and not words.
Re: Life on the inside as a ‘locked-in’ patient
#10Earlier quoted context omitted.
Yes but make sure one of those things isn’t heroin
Please let adults evaluate the risks and make up their own minds. Otherwise it sounds like MPTP https://www.acsh.org/news/2017/01/12/frozen-addicts-garage-d... but that kills dopamine producing cells, so did he regrow these?
> Please let adults evaluate the risks and make up their own minds.
I imagine Ellen would have appreciated the same opportunity to decide how she would spend that part of her life. (Ellen is the now-estranged wife of the locked-in guy; she spent months helping to care for him.)
Ditto the taxpayers of Massachusetts, who had to foot the bill for millions of dollars of medical care for the locked-in guy. Those dollars could have funded, say, education or infrastructure.
Adults' choices affect more than just their own lives. That's why we have social norms, and laws.