Stories of Long, Successful Recoveries (Neurology Edition)
April 28, 2022 2:37 PM Subscribe
My husband had a neurological injury a year ago and is physically disabled. Recovery is slow, but it hasn't stopped. I would like to hear stories of people with neurological injuries whose recovery was long/slow, but relatively successful. I'm interested in your stories, articles, and books. Less interested in movies/video, though short videos are better than movie or series length.
I have drafted and not posted a dozen Asks as life unraveled this year, but I think this is the one that I'm going to post.
Long version: a little over a year ago, my 12 year old son and I came in from the yard to find my husband, eyes open but unconscious, collapsed in the living room. I did CPR while Kid called 911. Paramedics came quickly, worked on him for about 20 minutes and rushed him to the hospital.
His heart had stopped; ventral fibrillation, no cause was ever found. He was unconscious for about seven weeks, three in the cardiac ICU, four in the Acute Respiratory Care Unit. Then he was moved to a rehab hospital, where he became responsive over the course of a few days. At that point he could talk and respond, though his articulation wasn't great. About a month at the rehab hospital, a month at a nursing rehab home, then home with us.
The heart problem is pretty much nothing--it seems to have been a freak accident, and they put in a defibrillator, so it won't happen again. But he was without oxygen for some period of time (between 5 and 20 minutes, we have no idea.) As some of you may know, neurological recovery is really vague on their prognosis. Every person and every injury is different.
He is mostly blind. He is in a wheelchair and can't walk very well. His fine motor skills are okay in his right hand, weak in his left. His speech is slurred. His balance is very out of whack (at this point that's the main hurdle to walking.) His long term memory is very good, and his mind and personality are very much his own (thank all powers that be), but his short term memory can be spotty, his spatial reasoning is rough, and he has a hard time making decisions or initiating things.
It's really, really tough, sometimes it seems more on me than on him. I feel best when I can see that he's making forward progress in recovery, but at a year, that's slowed down. I know at some point we're going to plateau, and where we are at that point is where we'll be long term. I would like to believe we have further to go, but it's hard to see the path after so long.
So please tell me stories of people who, a year after injury, were still pretty early on the path to where they eventually ended up. I feel like there are so many stories of people who took nine months or a year to learn to walk again, what about three years? People whose memories or eyesight or speech continued getting better.
We know he'll always be disabled. He'll never be able to drive again. He might not be able to walk very much. But all the things he loves most--drawing, comic books, video games, long slow movies with lingering landscape shots--are now gone, and I need some help in continuing to hope. Any such help appreciated.
I have drafted and not posted a dozen Asks as life unraveled this year, but I think this is the one that I'm going to post.
Long version: a little over a year ago, my 12 year old son and I came in from the yard to find my husband, eyes open but unconscious, collapsed in the living room. I did CPR while Kid called 911. Paramedics came quickly, worked on him for about 20 minutes and rushed him to the hospital.
His heart had stopped; ventral fibrillation, no cause was ever found. He was unconscious for about seven weeks, three in the cardiac ICU, four in the Acute Respiratory Care Unit. Then he was moved to a rehab hospital, where he became responsive over the course of a few days. At that point he could talk and respond, though his articulation wasn't great. About a month at the rehab hospital, a month at a nursing rehab home, then home with us.
The heart problem is pretty much nothing--it seems to have been a freak accident, and they put in a defibrillator, so it won't happen again. But he was without oxygen for some period of time (between 5 and 20 minutes, we have no idea.) As some of you may know, neurological recovery is really vague on their prognosis. Every person and every injury is different.
He is mostly blind. He is in a wheelchair and can't walk very well. His fine motor skills are okay in his right hand, weak in his left. His speech is slurred. His balance is very out of whack (at this point that's the main hurdle to walking.) His long term memory is very good, and his mind and personality are very much his own (thank all powers that be), but his short term memory can be spotty, his spatial reasoning is rough, and he has a hard time making decisions or initiating things.
It's really, really tough, sometimes it seems more on me than on him. I feel best when I can see that he's making forward progress in recovery, but at a year, that's slowed down. I know at some point we're going to plateau, and where we are at that point is where we'll be long term. I would like to believe we have further to go, but it's hard to see the path after so long.
So please tell me stories of people who, a year after injury, were still pretty early on the path to where they eventually ended up. I feel like there are so many stories of people who took nine months or a year to learn to walk again, what about three years? People whose memories or eyesight or speech continued getting better.
We know he'll always be disabled. He'll never be able to drive again. He might not be able to walk very much. But all the things he loves most--drawing, comic books, video games, long slow movies with lingering landscape shots--are now gone, and I need some help in continuing to hope. Any such help appreciated.
Best answer: I think you may find the book The Brain that Changes Itself helpful, though it's a bit more focused on advances in neuroscience (with lots of personal stories).
It's been a long time since I've read it, but it has a series of chapters about people who've had various kinds of brain damage, sometimes for very long periods, and how they've eventually gotten better. The basic premise of the book is that scientists used to think that the brain didn't change over time, but that has turned out not to be the case. In at least some cases and maybe all of them, the stories have been about new discoveries about how to treat brain damage. I'm sorry I don't remember it better - and I'm having trouble finding details about the book online.
When I was first diagnosed with a rare cancer almost six years ago, a MeFite suggested thinking about the first AIDS patients for whom AIDS became a treatable illness. Up until that point, everyone with AIDS died and died quickly. So in my lifetime, there has been this huge scientific advance. There is no reason that can't happen for my cancer. Or for your husband's neurological issues. I often tell myself this is the best time in the history of the world to have the kind of cancer I have. (Apologies if that's not helpful to you - it has been extremely helpful for me.)
posted by FencingGal at 3:51 PM on April 28, 2022 [7 favorites]
It's been a long time since I've read it, but it has a series of chapters about people who've had various kinds of brain damage, sometimes for very long periods, and how they've eventually gotten better. The basic premise of the book is that scientists used to think that the brain didn't change over time, but that has turned out not to be the case. In at least some cases and maybe all of them, the stories have been about new discoveries about how to treat brain damage. I'm sorry I don't remember it better - and I'm having trouble finding details about the book online.
When I was first diagnosed with a rare cancer almost six years ago, a MeFite suggested thinking about the first AIDS patients for whom AIDS became a treatable illness. Up until that point, everyone with AIDS died and died quickly. So in my lifetime, there has been this huge scientific advance. There is no reason that can't happen for my cancer. Or for your husband's neurological issues. I often tell myself this is the best time in the history of the world to have the kind of cancer I have. (Apologies if that's not helpful to you - it has been extremely helpful for me.)
posted by FencingGal at 3:51 PM on April 28, 2022 [7 favorites]
I’m sorry to hear about all you’ve been through. You could check out Laura Browning Grant’s Instagram account. Her husband Jonny had a TBI five years ago and is still making gradual, steady progress. She’s a pilates teacher and spends a lot of time working with him on PT, they’ve tried various kind of whacky-seeming (to me, who knows nothing) therapies, but something that they’re doing seems to see him still making slow, but observable gains.
It’s quite heavy on praising Jesus, which may or may not be your thing, but it’s fairly easy to ignore that if you prefer, and just see his gradual progress.
All the best to you all.
posted by penguin pie at 3:53 PM on April 28, 2022
It’s quite heavy on praising Jesus, which may or may not be your thing, but it’s fairly easy to ignore that if you prefer, and just see his gradual progress.
All the best to you all.
posted by penguin pie at 3:53 PM on April 28, 2022
Best answer: I just realized though that I didn't actually answer your question, asking for a story. My relative started out largely unable to move on her own, mostly blind in one eye, and without the use of her left arm at all. Her short term memory was severely compromised, and her speech was incomprehensible. That was about four years ago. Today, she is able to see out of both eyes, though she wears very thick glasses, after a couple of surgeries. She walks with a cane, but she can walk, and she's strong enough that she can play a round of golf with a golf cart (though she hasn't been cleared to drive the golf cart, that's a goal she's working on, and her team thinks it's not impossible). She had to learn to write with her right hand, but she is able to write now, and her cognitive function is good enough to get through a short meal with friends. She rests a lot more than she used to, and she's a lot quieter than she used to be, and she'll never be able to live independently again. But she and her spouse are still deeply in love, and they seem to take genuine joy in the life they have together, post-stroke, and to be hopeful about her future.
posted by decathecting at 3:57 PM on April 28, 2022 [3 favorites]
posted by decathecting at 3:57 PM on April 28, 2022 [3 favorites]
Best answer: The author Drew Magary wrote a book about passing out at a work party and the TBI and complications surrounding it called The Night the Lights Went Out. I haven’t read it but his other writing about the event and recovery have been very good.
posted by Uncle at 4:17 PM on April 28, 2022 [1 favorite]
posted by Uncle at 4:17 PM on April 28, 2022 [1 favorite]
Best answer: My Stroke of Insight: A Brain Scientist's Personal Journey is a really good and very readable book about a brain scientist who had a stroke and a longish recovery talking about what it felt like from the inside and what she learned about brain plasticity even in older (i.e. not kids) people.
posted by jessamyn at 5:39 PM on April 28, 2022 [5 favorites]
posted by jessamyn at 5:39 PM on April 28, 2022 [5 favorites]
Best answer: That sounds really hard. I'm sorry. I read a few stroke, aphasia and brain injury memoirs a while ago and these ones stood out. My memory is that these are narratives of recovery which took longer than a year, but apologies if I've got that wrong. My reason for reading them was the recovery of a family friend from a stroke and subsequent aphasia; it took something like three to five years for her language to recover.
* A Stitch of Time by Lauren Marks
* Locked In: One Man's Miraculous Escape from the Terrifying Confines of Locked-In Syndrome by Richard Marsh
* Time Out of Mind by Jane Lapotaire
* A Mind of My Own: memoir of recovery from Aphasia by Harrianne Mills
* How I Rescued My Brain by David Roland
Kate Davies has talked a bit on her blog about her stroke, here and here, and has a book about it called Handywoman. I haven't read it so don't know what her recovery time was, but she is always worth reading.
posted by paduasoy at 10:13 PM on April 28, 2022 [1 favorite]
* A Stitch of Time by Lauren Marks
* Locked In: One Man's Miraculous Escape from the Terrifying Confines of Locked-In Syndrome by Richard Marsh
* Time Out of Mind by Jane Lapotaire
* A Mind of My Own: memoir of recovery from Aphasia by Harrianne Mills
* How I Rescued My Brain by David Roland
Kate Davies has talked a bit on her blog about her stroke, here and here, and has a book about it called Handywoman. I haven't read it so don't know what her recovery time was, but she is always worth reading.
posted by paduasoy at 10:13 PM on April 28, 2022 [1 favorite]
Best answer: My dad had a very bad go of things in 2005. He either had a stroke while driving and crashed, or he crashed and that caused a brain bleed. This was in an extremely rural place, but a urse happened to drive past the crashed car some minutes (?) after it had happened, found him cyanotic but alive, and did CPR until the helicopter arrived. Recovery was slow, but here we are in 2022 and, you know, wow. Milestones: at ~2 years he could walk without a cane or assistance, at ~4 years he was able to drive short distances with lots of supervision, and for the last ~8-10 years he's been able to drive unsupervised to the grocery store and other nearby places. His language skills really took a ding: reading, writing, and speech were slow to return and jumbled for a long time, but now he's improved so much and I'm so used to his manner that I don't notice. It took him several years to get back to reading--he'd previously been a voracious reader, but he would get so frustrated and sad trying to read that he just didn't do it for years. But maybe 5-6 years later he started again, and now we talk abotu books over the phone all the time and he mails me books he's read and enjoyed. His long term memory has always been solid, but short term memory was nonexistent for the first 2-3 years. It started coming back in patches and now he's really good! Emotionally he went from being a kind hearted but taciturn man to a kind-hearted and vocal man. He says "I love you" so much more now, like a tight spigot was loosened that let him release the emotions he'd always felt. So, yes, have hope.
My ex husband had a head injury in 2018. It upended everything. Physically, he recovered very well and very fast. Psychologically, though, it ushered in what seemed to be an entirely different person but who, upon reflection, had always been there under the surface. Like with my dad, this trauma seemed to release a persona that had been tied up by social convention for his entire life. He became such an awful, inconsiderate, hateful person to everyone who had known him pre-injury that we divorced and I eventually ended all contact with him. Our kids--who were thankfully right at the cusp of young adulthood when this happened--picked up on all this much more naturally than I did and helped me come to terms with the changes. I don't communicate with him for the sake of my sanity, but I get occasional "he's doing well" updates from his siblings. So, yes, have hope that even if things progress in unexpected, unwelcome, or bad ways you can still have hope that he'll continue to improve in ways that are best for him.
I'm sorry you're in this difficult situation. You're not alone. Be well and big hugs.
posted by late afternoon dreaming hotel at 1:16 AM on April 29, 2022 [4 favorites]
My ex husband had a head injury in 2018. It upended everything. Physically, he recovered very well and very fast. Psychologically, though, it ushered in what seemed to be an entirely different person but who, upon reflection, had always been there under the surface. Like with my dad, this trauma seemed to release a persona that had been tied up by social convention for his entire life. He became such an awful, inconsiderate, hateful person to everyone who had known him pre-injury that we divorced and I eventually ended all contact with him. Our kids--who were thankfully right at the cusp of young adulthood when this happened--picked up on all this much more naturally than I did and helped me come to terms with the changes. I don't communicate with him for the sake of my sanity, but I get occasional "he's doing well" updates from his siblings. So, yes, have hope that even if things progress in unexpected, unwelcome, or bad ways you can still have hope that he'll continue to improve in ways that are best for him.
I'm sorry you're in this difficult situation. You're not alone. Be well and big hugs.
posted by late afternoon dreaming hotel at 1:16 AM on April 29, 2022 [4 favorites]
Best answer: I was at a talk with stroke survivors earlier this month. One woman shared that she had just this last year gotten feeling back in the affected side of her body, fourteen years after her stroke. Fourteen years!
Another panelist said she felt like her recovery kind of plateaued from 10-18 months, and she was extremely discouraged, but then she had a huge leap in function around 18 months out. They agreed that although progress is most rapid in the first year, improvement is possible indefinitely, especially if the person keeps working at it.
posted by mandanza at 7:33 AM on April 29, 2022 [2 favorites]
Another panelist said she felt like her recovery kind of plateaued from 10-18 months, and she was extremely discouraged, but then she had a huge leap in function around 18 months out. They agreed that although progress is most rapid in the first year, improvement is possible indefinitely, especially if the person keeps working at it.
posted by mandanza at 7:33 AM on April 29, 2022 [2 favorites]
Best answer: Try Over My Head, by Claudia Osborn
posted by olopua at 7:59 AM on April 29, 2022 [1 favorite]
posted by olopua at 7:59 AM on April 29, 2022 [1 favorite]
Response by poster: Thank you for all these answers. They definitely did what I wanted, which was jump start my hopefulness. Plus, I love nothing more than a reading list. It also gave me some search terms, and reading about plateaus in neurological recovery has been very interesting and inspiring.
FYI, we do have a full slate of PT, OT, speech, and talk therapy. I'm hoping to increase the frequency of OT as his endurance gets better. Really, we're doing fine in so many ways. It's just lonely, I guess, especially since I'm an extrovert and not used to spending this much time stuck at home.
I'm so sorry to everyone else who went through something like this, but thank you for sharing your stories.
posted by gideonfrog at 6:06 PM on April 29, 2022 [5 favorites]
FYI, we do have a full slate of PT, OT, speech, and talk therapy. I'm hoping to increase the frequency of OT as his endurance gets better. Really, we're doing fine in so many ways. It's just lonely, I guess, especially since I'm an extrovert and not used to spending this much time stuck at home.
I'm so sorry to everyone else who went through something like this, but thank you for sharing your stories.
posted by gideonfrog at 6:06 PM on April 29, 2022 [5 favorites]
Best answer: At the age of 49 -- my own age at the writing of this comment, a fact not lost on me -- my father suffered a stroke. My step-brother came home and found him in his bed, unresponsive. He received assistance immediately and was whisked into the OR quickly. Skipping the hospital bit of things, he came home having lost the ability to read, perform arithmetic of any kind, a fraction of his vocabulary, peripheral vision on the left side, partial vestibular function, some fine motor control of his hands, all domain knowledge of his chosen career, other long term memory, and some degree of general cognitive ability.
He initially did not recognize my step-brother. I had to read him the TV Guide and change channels for him. He needed help to dial a telephone. He could no longer comfortably drive, but us kids were too young to pitch in with that.
He was frustrated with his limitations, and for my father frustration is motivation. He attacked the work of recovery with an unbreakable will. The OT agency that assisted him on his rise from his illiteracy and innumeracy ultimately wound up hiring him as office manager, where he remained for many years. His prior memories never returned but he made many new ones. It was several years of work until he recovered nearly all of his physical capabilities and much of his cognition.
My mother in law's husband suffered a stroke in his early 50s. The initial prognosis was poor with a strong possibility of permanent coma or death. He woke up. Prognosis for recovery was extremely poor both physically and cognitively: likely an inability to walk at all and significant level of cognitive impairment. He lost some sight and some facial motor control.
The first year or so of his recovery was, surprisingly, pretty swift: he regained the ability to walk with a cane. His mental acuity improved right off the bat.
His recovery continued over several more years, a long, slow They no longer do the same level of outdoorsy, adventurous stuff they did before and he can no longer work on his antique Jaguar collection. He does, however, enjoy an otherwise active and engaging retirement.
There's hope. Please keep hope in your heart. He needs it as much as you do.
posted by majick at 4:17 PM on April 30, 2022 [2 favorites]
He initially did not recognize my step-brother. I had to read him the TV Guide and change channels for him. He needed help to dial a telephone. He could no longer comfortably drive, but us kids were too young to pitch in with that.
He was frustrated with his limitations, and for my father frustration is motivation. He attacked the work of recovery with an unbreakable will. The OT agency that assisted him on his rise from his illiteracy and innumeracy ultimately wound up hiring him as office manager, where he remained for many years. His prior memories never returned but he made many new ones. It was several years of work until he recovered nearly all of his physical capabilities and much of his cognition.
My mother in law's husband suffered a stroke in his early 50s. The initial prognosis was poor with a strong possibility of permanent coma or death. He woke up. Prognosis for recovery was extremely poor both physically and cognitively: likely an inability to walk at all and significant level of cognitive impairment. He lost some sight and some facial motor control.
The first year or so of his recovery was, surprisingly, pretty swift: he regained the ability to walk with a cane. His mental acuity improved right off the bat.
His recovery continued over several more years, a long, slow They no longer do the same level of outdoorsy, adventurous stuff they did before and he can no longer work on his antique Jaguar collection. He does, however, enjoy an otherwise active and engaging retirement.
There's hope. Please keep hope in your heart. He needs it as much as you do.
posted by majick at 4:17 PM on April 30, 2022 [2 favorites]
Hello! This is gideonfrog's husband, the subject of this post. Thank you so much for the perspectives on my situation. I have a generally positive view of my life right now, but your stories give me hope that things can get much better.
(transcribed by gideonfrog)
posted by He Is Only The Imposter at 10:09 AM on May 3, 2022 [6 favorites]
(transcribed by gideonfrog)
posted by He Is Only The Imposter at 10:09 AM on May 3, 2022 [6 favorites]
I haven't read Taylor's "Stroke of Insight" but the woman who wrote it did a TED talk and I found her description of the experience fascinating.
I know a couple of folks who've had strokes, and both of them have substantially recovered. One was a fairly minor stroke, but the other was very major and involved a long stint hospitalized and a lot of rehab but he is also in pretty good shape, now. Good luck, and I hope things go well.
posted by rmd1023 at 6:25 PM on May 4, 2022 [1 favorite]
I know a couple of folks who've had strokes, and both of them have substantially recovered. One was a fairly minor stroke, but the other was very major and involved a long stint hospitalized and a lot of rehab but he is also in pretty good shape, now. Good luck, and I hope things go well.
posted by rmd1023 at 6:25 PM on May 4, 2022 [1 favorite]
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I'm so sorry you and your family are going through this. I hope that, in addition to what sounds like a tremendous amount of support that you've been providing to your husband and child, that you have people in your life who are there just to support you. Get your own therapist, go to a support group for spouses of people with neurological disabilities, lean on your own loved ones. And make sure your kid has someone they can confide in who isn't you, both because you can't be his therapist, and because if he sees you stressed out, he may bottle things up to avoid burdening you, and he needs an outlet. Because this is something that happened to him, but it's also something that happened to your whole family, and you're going to need your own support moving forward in your shared life.
posted by decathecting at 3:50 PM on April 28, 2022 [4 favorites]