After four years, I finally got sent to another test session with a neuropsychologist to see how things are going after the stroke in 2021. After some discussion about various things, the testing started and not much has changed in the areas I struggle the most. Which is unfortunate, but the neuropsychologist (a different one than earlier) thinks I should have rehabilitation support. Of course, this should have been done much, much earlier - but at that point I was told that because I test "average or above" in most areas, support isn't available. Which is still the case, but there is some possibilities for help, that I wasn't offered earlier.
She also questioned why the paramedics didn't take me straight to the hospital given my symptoms, even though there is no way to know if it would have changed the outcome. But now, there is no way to know if it would have changed it, had they given me the shot to try and clear the blockage. If it had cleared, I would have been fine.
Brain cells under the bridge.
Accept it, and move on.
This is what I have largely done, but every time I talk to the professionals, they don't seem to accept it themselves. They know that protocol wasn't followed, yet they seem to also not want to raise the questions themselves. I guess they feel like it would be like investigating their own, a bit like the internal affairs officers not being liked by the police. I suspect if it had happened to them or someone they cared about, would they accept it.
The testing was interesting, because in some cognitive tasks I was considered very fast, and in others, I was embarrassingly slow. Slow isn't even the right word for some of it - as I was almost incapable. In the areas I was incapable, I have had to develop strategies to try and overcome the gap, but it isn't usually possible when processing on the fly through a discussion or meeting.
I don't have the official results of the testing yet, but I will have a discussion with a doctor at some point in the future and see if there is anything else that can be done. There are some studies with ADHD medication for stroke patients that could help, but they won't give me that because I am not diagnosed with ADHD. They hand it out like candy to children though. There are also some studies with psychedelics, and there is even less hope of getting a prescription for that here. But what I told the neuropsychologist today is, if I run out of available options, I will find the unavailable.
She was really nice and we had lots of good discussions in the three and a half hours we spent together. We talked about lots of different aspects of it and some of her experiences with others, like the person who had a similar (none are the same) type of stroke as me, but is barely capable to get himself out of bed he is in such a poor mental state.
I get it.
The challenge that people can't fully understand without experiencing similar, is that even a mild stroke can fundamentally change how we think, feel and behave. Essentially, the identity of the person pre-stroke may no longer be a good fit for the person who emerges post-stroke. And that person has to not only learn how to do things again, but also who they are now. It is a bit like suddenly being trapped on a deserted island with a stranger who reminds you of someone you used to know. They are not that person, they are different, but you can't help but see the similarities, even though so much doesn't match.
While I was sitting in the waiting room in the morning, I took the picture of the two seats and thought how it is a bit like that in my head. There is the old me, and the new me. While we are all always changing, most of out change happens gradually across all of the areas of us, not all at once to every part of us. I look largely the same, but I am two different seats. Yet, I am not comfortable on either of them.
Stuck in the middle between me.
Taraz
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While things have not improved, I am happy to hear that they haven't gotten worse. My dad had a brain hemorrhage a while ago and his short term memory and balance were really messed up. They had to put a stent in his head that constantly drains the excess fluid down into his body. It's definitely scary. Strokes scare the poop out of me. The fact that they still know so little to prevent them is scary too. I hope the test results come back with some viable options for you.
If you have one, keep some LSD handy. Supposedly popping some can start the healing process while it is happening.
Is your dad coping with it okay?
Yeah, it's been probably 20 years now and he is still going strong. He just gets around more slowly. Weed I can find easy, LSD might be more difficult.
Dang, obviously I have no idea how it may feel, but it kind of reminded me of the short period when I used to stutter. It was like certain letters like K and T, so if the word started out with one of them (and a few others), I had a very hard time getting the sentence rolling.
It lead me to need to come up with ways to restructure the sentence quickly so I wouldn't have to start it with those words, was generally quite annoying. No idea how I finally got rid of it but I think lucid dreaming kind of helped as I did that quite a lot during that phase, like "on purpose".
I wonder also how many may have suffered a mild stroke and just not realize and go on about their lives for a long time.
I didn't know you stuttered. I have heard it is a sign of intelligence. What do you think caused it for that short period?
I had a lisp (still have a slight one). It isn't intelligence - just makes me sound like I am gay. But I did a similar thing to you, avoiding S words. I still avoid many :)
I have the same question. I se similarities between me and a few others I have met, who haven't had strokes and it gets me thinking if they just didn't know.
Yeah.
It was around when I was around 18-20, lasted for maybe 6-12 months. It was worse when there was a lot of background sound, like in club or parties. I remember some times leaning in to friends ears to tell them something and nothing happened so they just looked at me and wondered if they'd become deaf, lol.
lucky It didn't last long though, when i was too lazy to restructure the sentence or too drunk I'd just start It with "vittu..." or "va fan..." which may have changed what people thought of my mood at the time, lol.
lol! This shouldn't have made me laugh, but it did.
It is interesting what kinds of strategies we come up with so as not to look bad in front of others.
Yeah.. it's kind of the business model of web2 social isn't it, pretend your life is so much better than it really is so that others always see you in a good light
Your thoughts on how identity changes after a stroke are indeed touching. It is like trying to deal with a new way of living while still remembering parts of who you used to be.
Yeah, it is a strange experience for sure. Familiar body, unfamiliar everything else.
Hmm, looking at the case from your perspective. It is obvious that they could have done something from the start, and I get it as the person you meet today didn't really want to talk much about it since it would be like exposing her fellow colleagues and I think they will do it anywhere too. She might later challenge her colleagues and see what they could have done better about it, but she won't want to do that in your present
And like you said, if it had happened to any of their relatives, they have done something different anyway.
Also, It is good to see that you are doing well even though you are still lagging in some area, too, but I do believe that with time, it can only get better.
The problem is, they follow the rules - but they didn't follow the rules when I had the stroke! :D
Your chair metaphor helps me better understand how you feel.
Why not? Is this an insurance won't pay for it thing?
I don't have insurance for this kind of thing. Or any healthcare. It is all public for me here. It is quite different here than in the US :)
So the rehab you could benefit from, for someone of your cognitive level, is simply not done? There's something about the way you worded it that makes me think you could get it, if you met different criteria.
I was told at the time, if I couldn't feed myself, they would spend endless amounts of money to teach me to improve my quality of life. Testing average or above meant that I was considered okay enough. They didn't factor in that it wasn't good enough to do my job normally.
In the US, we are told that insurance won't pay after you have acheived 80%. So many people, most people, just live with that. They can no longer imagine paying extra for medical services, and become "happy" with 80%. We can get further services, for out of pocket payments. It's a big you-get-what-you-pay-for system here.
I believe it’s better getting a heart attack because you just have to change the diet a bit or exercise more etc . But a stroke is a totally different ball game . My dad got one and it totally changed him . Even his personality was different . It’s tough to come back 100% from it
I am hoping he turned into a loving and beautiful soul who gets joy from the little things.
(Rarely the case)
Yea, 100% is out of reach for everyone I think. But, "better" is possible.
You've experienced a serious health problem. I hope you live the healthy life you desire.
Changes like these are turning points; nothing is ever the same again. There will be times when things aren't going well, when things aren't going well, but it takes a strong will to prevent this.
You're doing everything you can to improve your current circumstances. I believe you will succeed.
Succeed or fail, I think at the end of the day, life is just about trying to meet a meaning.
The truth is, to me, we can't always rule out the role of the opposite sex and also a kind hearted professional. Maybe those that attended to you then didn't evisage or thought your case wasn't critical so to say.
It is good to know that despite lack of major transformation, you are still in good shape. Sooner or later with your contact with the right professional everything will be sorted with time. I really must commend your devoteness to this platform despite your health status. It only takes discipline and the right mindset to do this.
It is not about critical, it is about average. Average is good enough for them. This is the way of governments.
For further development in the subject areas I failed 8 subjects In the areas where I failed, I have to develop strategies to try to overcome the gap. Or it is usually not possible to do it in a quick way through a meeting. In the areas where I failed, I have to develop strategies to try to overcome the gap, but it is usually not possible to do it in a quick way through a discussion or a meeting
I am not sure if this translates. I don't understand. It could be my brain though :)
I often use Google Translate for difficult English phrases. It turned out that my comment was given the wrong meaning. It is actually difficult to understand as you mentioned. So I hope to leave the translation and comment normally.
Even if you are facing some health problems after facing a stroke, you will overcome that challenge in the future, just like you faced other challenges. I think the long discussion with the neuropsychologist must have given you some comfort. Because she has experience with many stroke patients.
I sincerely hope you'll keep coping post-stroke. It ain't easy, but you've done a good job of that so far. The meeting with the neuropsychologist no doubt lightened the weight of the situation. And it's especially difficult raising a family while being in this type of situation. I wish you the best.
It makes a lot of sense how even a mild stroke can change not just how you think, but also how you see yourself. I think many people don’t realize how deep those changes can go, beyond the obvious physical side. It is good to hear the new neuropsychologist is open to discussing support options, even if it feels very late.
How much has your mobility changed over the past year?
I relate in a small way — sometimes I feel like I’m changing so fast that I don’t recognize myself compared to just a year ago. It must be on another level for you, but I admire how you’ve kept going and even found strategies to adapt. Il
The old and the new and the mix of both. That kind of sums it up nicely. The experience with my father was that, everyone had hope that he would get "back to normal", except me. I like having hope, but sometimes it just blocks us from a new reality that we have to face, and the sooner I gave up on it, the sooner I could get to know my "new" father. Many treats were still the same, fortunately, but the change in behavior was obvious, the frustration more than anything. It always felt to me like he himself could very precisely remember who he was, and was trying very hard to get back there, but just couldn't, no matter how hard he fought. Eventually he, too, had to give in to being a new person. He's better since then. And it became easier for my brother and mother, too.
Please be careful with the White Coat drug pushers and how they will gleefully try this drug or that drug. They get enough scripts they get another bonus and a second Lambo.
My step sister is toast. Burnt toast. She is a babbling buffoon compliments of the white coats throwing their psychotropic darts to curb her anxiety attacks. A 30 year guinea pig. Now she is a drooling fool. Ok. Not that bad yet but detached from reality a lot. They fried her brain. One script at a time.
Are You researching the down sides of Big pHarma and their poisons.? We just had another gender confused psychopath go ballistic over here and what nobody seems to say out loud is almost every mass murderer is a white coat guinea pig gone bezerk. 🥺
I can relate as I am also stuck between the old me who used to be carefree and an independent boy, and now stuck with tons of responsibilities that are beyond my capability and i'm already in my knees, struggling hard to stand up again as i wont let myself down as it takes down a few more as well.
Just like you watching on those two seats and trying to recall the old you, i too get carried away oftentimes while scrolling down through my phone's gallery back to 2021,2022.
Wishing the best for you...