30 years after TBI and Im going backwards

I got hurt 30 years ago and have been saying for a while that it feels like I’m getting mentally worse or all of the work I did in rehab (1-year). The things I overcame are coming back. Makes sense to me after watching my dad loose a step or 2 at 60, that I would start having problems with slight dementia ect now that I’m older. When I explain to a neurologist they look at me like I have 5-heads. Is there anyone on this site that is 20 or 30 years out from there injury that is having new or old problems. Theres basically no research on TBI patiants decades after injury or what happens to us as we become senior. People who haven’t had a TBI struggle as they age


Oh yes, forty-three years out from my head injury, I am 62, and now my autonomic system is not working right, my brain cannot communicate in verbal expression, my skull explodes with pressure from swelling, night sweats, and lots of physical and mental exhaustion. My cells have deteriorated, though we get new cells, it seems the old cells gives the new cells this deteriorated information. Therefore, my cells do not communicate energy to my muscles and my mental connections are going haywire. My body and my brain will deteriorate into true craziness, then I feel nothing in the world to identify with or believe in. My madman will then attack and if I am not careful it creates attraction to the darkness. Cancer is also entering the picture now.

For me I am doing my best to sharpen my awareness and living in a sober awareness, like a crisp morning, rather than getting caught in the darkness or cancer. I am trying teach myself a quiet mind and to find satisfaction in the quiet. This quiet seems to help create an opening and to feel clear receptive consciousness. If I can be sharp in my awareness it will allow nothing to “stick” in my consciousness and my boundaries drop away. These boundaries were used to protect me and keep me fearing how I have reached some dead end in my life. Because my anxiety is reaching a new pitch, my rage will expresses itself, and yet I am doing my best to penetrate into clear awareness.

So in a sense, maybe after all the old and my deteriorating cells are to make this into clear awareness and even an opening. Granted this is raw materiel and yet a quality of awareness seems to give any experiences a satisfying quality. Or this is what I am reaching for and maybe satisfaction is not in a particular experience and just a quiet satisfaction is quality. (In my writing I am working through my own material and is not meant to make life intense for you. I usually write and the meaning is beyond what I intended to create — good enough).

thanks for responding syd, I think lowered concisnous is a fair description. But thanks for letting me know I’m not crazy or making this stuff up. Good luck Syd

I had a brain tumor/hemmorhage in 1990. My memory is getting worse, but my coping skills are getting better. I had a 23 day coma, 6 months hospital, 18 months rehab. I was 20 when it happened, I have all kinds of aches and pains. My dad just says I’m just like my mother, but monetarily and mentally better since I left…

I realize that I’m late to arrive at this discussion… All of the research I did after becoming injured at age 42 indicated that my chances of developing some form of dementia or Alzheimer’s Disease skyrocket as the result of the TBI. My short term memory was so bad for the first few years that it felt as though I was already suffering from dementia. While each head injury is said to be entirely unique, I can only hope that maintaining continual cognitive rehabilitation activities will be helpful.

Johncaeien, you surely aren’t making up your experience, and are not crazy. It’s important for you to know that you are not alone and that there are people who have issues similar to what you’re dealing with. Syd, I can so relate to the swelling that causes the skull to feel like it is exploding from the pressure. And, thank you for mentioning night sweats. I didn’t know that men suffered them from TBI. I have them very badly but thought that it had something to do with my age and hormonal changes. It’s so scary to face the aging process knowing that there may be endless repercussions from a TBI no matter what I may do.

Still I try to have hope, and take as much turmeric as I can manage, for it’s protective effect against developing Alzheimer’s. At least the turmeric cannot hurt, and it does help relieve some of the inflammation around some of the points of injury. My entire body was severely injured and slammed when the catastrophic motor vehicle accident occurred. Maltman70, that’s something I can take solace in: learning to improve my coping skills. Aging with TBI to deal with is not easy. Knowing that I am not alone doesn’t keep me from feeling terribly isolated and alienated from others. I hope some of this gets easier in time…

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I’m late to the discussion as well, but its a great topic. My brain surgery that resulted in this tbi, was about 15 years ago. I recall one of my drs telling me that my memory would get some better, then level off and then get quite a bit worse. Not sure about time frame he gave, of course.
It seems like I get out of practice with anything, it takes me longer to pick it back up.
Also, I try to stay somewhat active, I think that helps. Its not always possible though with the migraines and other issues we all deal with.

Thanks Anna1 for reminding me this is not in my head. I tried to work part time at Walmart recently. When I was in the middle of rehab 30 years ago my sister took me to convenience store. All of the different boxes-prices-packeging-people freaked me out and I ran out of the store. My 2nd day at work they took me in the back room with a bunch of different small boxes that we tried to organize and the same feeling came back 30years later. I don’t understand how to explain this feeling other then overwhelmed to people because everyone just want to compete with me about how bad there memory is. I monitor myself for mental errors sometimes to see if I’m going down the road to dementia and have been concerned about the future. In that moment and for the rest of the day I felt the reality of the feeling that what I have been concerned about is here. Somedays I look forward to what I feel is coming so I can stop the tireing effort of trying to present myself as normal to the rest of the world. But I have a 16 year old son that I am trying to prepare for the world and being strong is one of the only things I have left to show him or teach. So I fight on but I am very tired inside.
Thanks for everyones responses they do help!!!