Adult Life after a Traumatic Brain Injury

Hi Kay,
You are a superstar! I hope you don’t think aphasia is ok just because you don’t need to use big words anyway. Felling “Normal” is relative to your normal, no one elses, and you deserve to reach for it on most days! Thank you for sharing your story in years. So many facts do not include “years” of recovery.
I have been recovering, and you’re right that it’s hard to see progress until it’s hindsight. But those moments are great when they happen!

Hi Sue,
I realize this post was made some time ago, but a BP of 200 is not ok, especially with an aneurysm. First I will think to see if the BP machine is one you can trust, like a new model, batteries ok, etc. Then to see if it has specific directions (like hold arm at heart level) etc. If that’s correct, then some things can cause potential misreads, like shaking or tremors, talking during the measurement, and having an irregular heart rate like atrial fibrillation. Since machines are not perfect. I would suggest a cardiologist consult. There are a few things here that can be ruled out to give you peace of mind, or that may be co-existing with the TBI. Please consider a cardiac workup today, and if your well working meter reads BP 200, I would call 911 as this requires timely expert intervention.

9 years was my response to another members post and the 6 month was since my forceful fall on hard cement, first point of contact was the middle back of head. I cannot find any place near so. NM wherethey will treat PPCS oe TBI and I pray I will find a place.

Hi, @loismay. I see you've joined Mayo Clinic Connect rather recently, so I wanted to welcome you. I am glad to hear this site helps you realize you are not alone.

Pardon me if I misunderstood in any way, but I wanted to clarify whether you have had the TBI for 6 months or 9 years?

Either way, what has helped you keep up hope with TBI?

I have only been suffering for 6 months, 9 years of suffering symptoms is beyond belief. Why is there so little awareness of TBI or PCS and its debillatating, life altering changes.

At least finding this site helps me realize I am not alone asking "Where did I go?" "Who am I today?"

We need help with adjusting. Hope has to exist.

Hi Dawn. Thank you for creating this outlet. To you and everyone who has posted, I offer my sympathy for the loss of your former self. Nine years ago, I suffered a high-speed head-on by a driver not looking where he was going. Concussion and multiple spinal injuries. I lost most of my words and after 6 months with a dictionary on my lap, got most of them back. (I start losing them again if I don't do crosswords daily.) I continue to suffer from every single symptom in the "Persistent Post-Concussion Syndrome" listing. I am better than I was the first couple of years after the accident, But so far away from where I used to be. Executive function is so lacking I used to sit by my dresser and cry because I couldn't figure out how to pick an outfit and get dressed. (I learned to wear a "uniform.") Ocular migraines are so bad I bump into people and trip on pets. My best advice is to never stop doing battle for yourself. Advocacy for TBI patients just isn't there, so if you don't have a loved one who is willing to fight with you, hire a psychologist to get to know your case and help you. Strangely, my best help has come from you-tubers, mainly with autism, who share what helps them with their sensory, communication, cognitive and energy issues. (search "autism accommodations" or "autism life hacks") For those of you with severe medical issues ongoing (BP, unbearable headaches, etc) I say shame on your primary care providers for not fighting to help you. Get your medical record copies and write a timeline of symptoms beginning with your injury, and the next time you are in a crisis take it all to the ER and demand help and answers. Keep going until you find improvement. Finally, the therapy you had at the beginning needs to be ongoing -- use it or lose it. Keep doing your physical therapy exercises, practice radical self-care and protect yourself from the stimuli and unhelpful persons that harm you. I will be praying for you all.
(Currently suffering severe burnout and exhaustion from trying to do half of what I used to ...I hold out hope it will improve soon)

I feel the same way as you do. How old are you? I will be 75 soon and have the same worries as you do. Only thing is I was perfectly fine before I hit my head. As I said above I have no old age issues, not a one. My female family members lived into their late 80's and my aunt lived to 100. I'm still sleeping all the time. Yesterday at a neighbors backyard party I was sitting with the back of my head to the sun, it was almost 90. Now I know I have that benign tumor at the base of my head and the doctor said 'Oh it's nothing to worry about, just ignore it"....within about ten minutes I completely lost my hearing. Couldn't hear a word. Worse then when you come down on an airplane and your ears clog. Is this another issue, who knows?? My daughter called and asked if we would like to join them for July 4th and go with their friends and the grand kids to a Mets baseball game in NYC. We will be on Long Island for my granddaughters graduation. A special viewing box with its own food and fancy seats, fireworks. My husband will go. I can't. Not after yesterday, I can't ruin their fun by having something happen to me. I see a new concussion doctor Friday as a second opinion. I'll write back what he has to say...I'll probably forget, but if I do just send me a note on here....LOL....it's that damn no more memory.

What a relief to find you. I'm two years in as well. I thought I was VERY SLOWLY recovering but the last several days have been a roller coaster of disorientation, sleep and more sleep . What I think I'm looking for is some reassurance that this can be part of recover and not the onset of dementia or worse. Got any?

Hello...I fully understand that you are losing hope...I had hope for the past year. and just gave up all hope today. Waiting to finally see a Neurologist who is suppose to have run a concussion clinic I went very prepared. I wrote a brief description of what happened because my ability to communicate is all screwed up. I am a young 74 with zero age related health issues. I had a severe concussion where I slammed my face into a heavy glass door then hit the concrete... so hard that I broke my neck at the C-3 level. Whiplash and torn ligaments > I was unconscious for 30-59 minutes. It's been over a year and since that day my blood pressure is out of control. Im taking 9 BP pills a day and on any given day my BP rockets up well over 200....I waited month so see the Neurologist and brought everything in order of tests, reports, scans and a list of symptoms... the man looked at nothing. He said he has never heard of erratic or high blood pressure from a TBI....Honestly??? My primary doctor wanted me to go to Mayo in Rochester. I can not do that as my husband listens to the doctors and says it's all Psychosomatic. I can produce to these doctors what Mayo has online that it is a secondary problem and a serious one. ..I have a small aneurysm that appeared in 22' so I am afraid of having a stroke. I also have body temperature changes, either a fever or I'm freezing. My head feels like it's going to explode the pain is no plain headache. I even have a dent on my forehead and yet they still say it's nothing.....I don't want to end up in some nursing home in a few years because the people are just ignoring me. It's very frustrating. How can a man who is suppose to be an expert in his field say he's never heard of erratic blood pressure being connected to a TBI....It's all over the internet, and I only look at the Mayo Clinic site or the National institute of Health , a government agency....they are killing me slowly and I just don't understand what they have to gain by not being honest......So you are not alone..Is it because we are women??

Hi there. Adult life is different after a brain injury, and even worse from a Traumatic Brain Injury. In my case, it took me a full year to really think I will be ok. I wasn't really ok but I knew I was getting better, so I gained that as a good thing. Two years is a short time. Think about your kids, they grew better & better every year, and so will you. Find the good times/days/event and write them down on a calendar. A journal works too, but I did a calendar to keep my "notes" small. Then it becomes easy to see and remember those good times. It also made it easier to forget what was in my way. If/when I needed my wife to be something I always did, it sucked for sure, but it made me help her in the "task". For instance, when she was done, I took the bill & check into the envelope, put on a stamp, wrote my home address on the "from" line. Making sure that task was done. After a few times of that, those small tasks became my tasks again. Don't think that time is a problem, use it as an ally. Give yourself a pat on the back everytime you finished any task or chore. Your brain recovers daily as long as you believe in yourself and never stop. But it takes so much energy. Be nice to yourself. You will continue to recover in your favor.