I'm fascinated by conditions like autism, Tourette syndrome and other conditions that are neurological in nature. I'm particularly interested in how those affected live day-to-day with their conditions.
Do you know someone, or care for someone that has a neurological disorder? What is daily life like for them?
If you have one, what's it like to live with it? How would you explain it to someone who doesn't have a clue what it is?
I might delete this. I ran this by Dala as well, to make sure she was comfortable with me sharing this, because it is an issue that affects our marriage. When I was a kid, I used to be pretty adventurous and I took quite a few tumbles and suffered a few concussions in my time. These days we know those add up. A while back, I suffered a subdural hematoma. It was so bad, I was in the hospital for about a week, and initially they were literally considering cutting out a piece of my skull to relieve pressure. I almost died, which at the time wasn’t all that scary but looking back and thinking about it now, it kind of is. I guess that was a tipping point because things changed after that. For a week or so after I got out of the hospital, I was fine, but after that there has been noticeable changes to my mood, my thinking process, and my ability to process and retain information. They started out slow, then built up rapidly, and now I think the changes have plateaued. I won't go into specifics, because some things are scary, some things are embarrassing, and as a whole it's pretty personal. In short though, while I'm the same person in many ways, I'm also different because my thought processes are different, the way the world influences me is different, and I literally feel like a different person. It's also created some concerns about dementia or Alzheimers on the horizon, as those already run in my family and apparently head injuries increase the risks. The best way I can describe what I'm going through though, is that it's like I'm going through puberty all over again. I have new thought processes that are completely foreign, feel emotions that are both different and much more intense than what I’m used to, and every day I'm learning and figuring out how to cope with these changes and how they affect how I perceive and interact with the world around me. It's a lot of work and it's not easy. There are some distinct upsides though. I'm way more into art than I used to be, I'm even more into nature than I used to be (I didn't even think that was possible), and I'm much more empathetic than I used to be. Not that that’s a decent trade off. If I could go back in time and undo the damage, I would in a heart beat.
Very sorry to read about this. Brain injuries are horrible. I spend basically every waking hour that isn't spent taking care of my kid or playing/watching hockey thinking about brain injuries and stroke (well, minus Hubski time). We're developing a drug (that aids recovery) that I hope will be in early phase clinical trials by 2021. I know that's not very comforting for you, but hope is on the horizon. It's fascinating that your capacity for empathy increased after your injury. This is fairly abnormal for many people. I've known a number of people who have lost their ability to really interact emotionally after their injury in the same way they could before. Not to say you're one of the lucky ones--obviously nothing good about having a subdural hematoma, but I'm just commenting on how mysterious the brain is. One of the frustrating thins about TBI drug development is that recovery is so hard to quantify, due to the range of symptoms people who seemingly have similar injuries can present with, literally anything from face blindness to hearing phantom noises to headaches to increased empathy (I admit I've never come across that one!).
Maybe empathy is not the right word. Whatever it is is the result of heightened emotions. I try to not worry about it too much and remind myself constantly that I'm actually very lucky, because I live in a relatively stable environment and am surrounded by supportive people. The best advice I've gotten, that's helped, is that I just need to familiarize myself with myself and with that comes control. It's exciting to hear what you're working on though, in hopes that it will help people down the road. It's probably not the easiest job, but it's good to know there are people out there trying to tackle the problem. It's also good to see over the years the heightened public discourse on brain injuries and how they can affect people. Maybe it'll encourage some to make healthier decisions and take less risks.
Wow, rd95. That's horrific. I'm glad that you're alive, even if, as you say, it's like going through puberty again. It's brave sharing this stuff, especially online, but I'm glad you did. If I could hug you, I would, brother. Not much else I have to say, except you're awesome. Thanks for sharing. :)
My housemate has an undiagnosed degenerative neuropathic disorder that is causing him to slowly lose motor function. He used to be lead singer and guitarist for a funk band... but now he can't even curl his fingers around the neck of the guitar. He's got a keyboard and pokes individual keys, one at a time. Using his cell phone is mostly a voice-only thing, because his fine motor function is gone, he can't type really. They wanna do a spinal tap to extract spinal fluid and test it, to try and figure out what is wrong. It is fucking scary, fucking expensive, and fucking painful. So he has opted out of it so far. Last year, walking home from the bus, he slipped and fell on the icy hill. He apparently hit his head on the ground and knocked himself out, and rolled into the ditch next to the road. Some time later he woke, found his way home, and fell asleep .... with a massive concussion. It was 25-degrees outside. At night. He should have died. My wife and I keep a close eye on him and his health. His family is all back in Buffalo. And yet I have never met a more relaxed, loving, buddhist dude in my life. (Helps me keep my "problems" in perspective.)
Friend has Tourette's. Mild. Sometimes he gets a tic while talking, squints, shakes his head violently and moves on. He'll mumble and occasionally make weird noises. When I first met him (as an adult) he tweaked out a little and said "by the way I have legit Tourette's so if I seem a little weird to you, that's why." He leads a completely normal life.
One of the things that interests me about Asperger's, perhaps ASD in general, is sensor overload. Most of us have filters that block out noises/senses/whatever to prevent the overload from happening. Am I right in assuming people with ASD don't have those filters? If I may ask, what is meant by this?I'm 'on the spectrum,' but not by much
I know (at least) two people with epilepsy. It's controlled in both. One doesn't drink because of the epilepsy, one does. One has a therapy dog, one doesn't. Honestly, I would never know either had epilepsy except I'm close enough to them and have known them long enough that it's come up in discussion; daily life for them is like daily life for anyone else, as far as I can see. I am sure there are some medications behind-the-scenes which I don't see, but I think that level of detail or information is probably not something most people who are friends with people with neurological disorders are going to have. I don't imagine people like to talk about the conditions that make them "different from everyone else" whenever someone lets slip their label. But hey, I'm neurologically normal so who am I to know. I do know that for one of them, it was a concern/something his girlfriend wanted to learn more about and understand fully when they started dating, in the off chance he had a seizure while they were hanging out together or something. But she did the research and they talked about it a few times (I'm kind of assuming; she's my sister, though, so it's a fair guess) and it hasn't come up in conversation between her and me for, like, months since then.