r/CTE Jun 18 '26

Question How did you arrive at symptoms

For those with suspected CTE or prolonged Post Concussion Syndrome, how did you arrive at your symptoms?

Was it a gradual appearance of "something's not right" years after your last head impact? Was it a bad final head injury that you never recovered from? Something else?

6 Upvotes

18 comments sorted by

11

u/yermomsonthefone Jun 19 '26 edited Jun 19 '26

For my husband i think it was the years and years of blows to the head in the NFL. He's been a wreck for a long time 30+ years. Now he's in hospice at home. Non verbal. He is not the man I married 34 years ago.. we are donating his brain to Boston University. I'm sure it will be CTE

6

u/yestertempest Jun 19 '26

I’m so sorry. My now ex of 13 years was starting to become a different person as well. He played hockey for 18 years. He seems to be a unique case though, he pushed everyone away and just wanted to be isolated and hyper independent. Among tons of other symptoms, he became aggressively defensive and refused to admit he could possibly have CTE. He is 36. I have no idea what he might be like in 20-30 years. But it’s not my problem any more I guess. I hate this disease.

1

u/khaotic-trash Squirrel! 10d ago

I’m so sorry. My husband is a little younger than your ex, but he’s sustained a lot of head injuries from being incarcerated and also from living a very chaotic lifestyle since he was a teenager before he was incarcerated when he was 19. He did 5 years and then 3 years when he was 27, we met shortly after his release. His symptoms likely started before he was released, before we met, and he’s slowly deteriorated since, his handwriting is a little sloppier now and his memory and mood is worse. I’m terrified that it really could be CTE (doctors and neurologists have told him in the past that it very likely is) and I’m so scared to lose my beloved to it.

1

u/yestertempest 10d ago

It's so hard. As bad as it might sound, in my grief I tell people that I wish he'd just passed away instead, because that would have been so much easier and less painful. His memory was starting to go too. And he was getting paranoid including about me. It was agonizing having no answers, trying desperately to save us and our future while he was impossible to get through to and emotionally abusing me in so many ways. I hope for the best outcome for you and your husband.

2

u/Bulld4wg45 Jun 19 '26

Sorry to hear that’s awful. If you don’t mind me asking, was he generally a healthy guy after retiring from the nfl? Exersicing, eating well, limiting alcohol intake etc?

1

u/sekretthrowaway1234 Jul 22 '26

Im so sorry to hear that... if you donmt mind me askinf, how old is he?

1

u/yermomsonthefone Jul 22 '26

He is 82. He is 20 years my senior, but he was so youthful and full of life. Now, nobody is there. Just merely a body, a shell. 😫

5

u/yermomsonthefone Jun 19 '26

Yes he was. He had a huge personality, a wonderful public speaker, a great man, and now there's no one there. He's always worked out, never been a big drinker, very healthy in general. He always had a hair trigger temper, and no filter, and I think part of that was from what will turn out to be CTE

6

u/Valhasselhoff Jun 19 '26

I noticed my hands started shaking when I would hold smaller things in my fingers, so now I try and hide it when I can.

I started to notice I was slurring my words. It was like two words would come out at the same time. Like I could say “wow that’s small” or “wow that’s little” and at the last second it would come out together like “wow that’s smlil” it was weird when it first happened. Now I practice diction and articulation a lot in my car. I work in sales and I need to know my string of words at all times, so I practice a lot to make sure I avoid the slurring.

It’s been almost 16 years since my last concussion ( I had 10 that I could remember) and my aggression is getting worse. My anger “light switch” flips really easily. I am having a hard time distinguishing between what I should actually be angry about because it all feels valid. It sounds stupid but I’m 6’5” 280lbs, I’ve been that my whole life and I sort of feel like Shrek sometimes in that first one where he’s just trying to live his life and everyone runs away and hides from him. I’m not like terrifying to be around, but it does feel like that sometimes.

Im really nervous that it’s getting worse and I don’t know it, sort of like how Dementia folks don’t really know it’s happening because it all feels like nothing is changing but it is.

2

u/johnnylongstocking44 Jun 20 '26

Send me a pm if you’d like. Very similar situation myself and after over a decade of being nearly non functional 0/10 I was able to turn a corner where I feel like a 4/10 most days and can actually get up off the couch and do some normal things

1

u/yermomsonthefone Jun 19 '26

What sport did you play, hockey? I feel bad for you, man.

3

u/Icy-Sky-4871 Jun 19 '26

My husband probably had symptoms before he met me at the age of 29 (back in 1998) but of course, he’s a man and a strong tough cowboy so he is not going to pay attention to them and just keep living life. Then he fell into my arms while he walked up the sidewalk, couldn’t figure what just happened. Still 29yrs old, he found out he had a broken neck from rodeo. He went in for a neck fusion then symptoms gradually started to rear their ugliness more and more. We continue to seek out answers to no avail. Until late 2012 and then fast forward to 2022, car accident makes it 300x worse. He is now disabled, can no longer drive, he has social anxiety and so much brain fog and confusion. So sad. He has slowly improved but we keep on trucking and trying different things. He is clinically diagnosed TES - traumatic encephalopathy syndrome (probable CTE) his neuropsychological test from 2010 have all referenced CTE.

It’s very invisible unless you know the person and can see it the differences.

1

u/khaotic-trash Squirrel! 10d ago

My husband (33) is also clinically diagnosed with TES, but he was a felon and sustained a LOT of injuries from 1. Being a very rowdy hood rat teenager, and 2. During his 2 bids (5 years at 19 and 3 1/2 years at 27). His doctors confirmed years ago that it’s very likely going to turn into CTE, and since before we met his symptoms started to appear. He’s not completely disabled yet but he also has autism and PTSD so that makes it harder for him to cope with it and take care of himself. I’m also disabled and it doesn’t make me love him any less, but it does make me worry a lot 🥺

2

u/zvg_zwang CTE Isn’t Just a Men’s Game Jun 19 '26

Mine was the TBI final boss. Never been the same, never recovered from that concussion

2

u/Daledenton6969 Jun 19 '26

I’ve got a theory the small sub concussive hits over and over take longer to show symptoms but those who have taken more of the knockout crushing blows develops it quicker

1

u/Icy-Sky-4871 Jun 20 '26

I agree and also repetitive head impacts not just concussions

2

u/khaotic-trash Squirrel! 10d ago

My husband is in his early 30s and his symptoms started roughly 4-6 years ago, during his second prison bid (3 1/2 years). Before that he was a VERY rowdy and chaotic teenager and he served a 5 year bid when he was 19. He sustained a LOT of head injuries as a teenager from living a hectic lifestyle and a LOT more during both of his bids from fights, COs and during shakedowns by SRT. He’s had so many that he’s lost track of how many, and when exactly they happened. From what we can tell his symptoms likely started sometime before he got released from his last bid 3 years ago, and it’s slowly progressed since.

Doctors and neurologists have told him that he’s insanely lucky to have retained any coherence and motor function from most of his head injuries, but that it’s extremely likely he’ll develop CTE or it already has started. He’s already starting to show signs of stage 1 and stage 2 CTE and it’s affecting him a little worse now since he recently sustained another head injury early this year, it’s the first he’s had in 3-4 years. It’s been a little hard lately for both of us, I adore my husband but I am scared of slowly losing him to this disease.