Traumatic Brain Injury: Come introduce yourself

@ejj0320 what are the specs u mention? Bifocals with transition sun tint or something else? My eye glasses struggle with double vision is for real. Hard to find an eye doc who gets TBI sensitivity and need for high contrast without messing up script to more of a struggle for the brain.

Hi. My name is jean. I am 9 months into my brain injury. I am very discouraged. I never got headaches or sensory issues but I have terrible anxiety and depression. I am hoping after a year things will look a little better.

Hi,
My name is Marcus and my wife suffered a TBI eight years ago.
As is probably the case with most TBI victims and the friends and family that love them, we have really been through the thick of it.
My aim is to seek out advice here and there, but also share, and offer, things I have learned from the experience and sometimes the solutions we find on our own to make things that little bit better.

@profdoyle -- Marcus, my wife suffered a TBI four and a half years ago and, with my help, regularly posts to this chat group. We just posted to MargaretAllen above. I don't know if Mayo has a chat group for caregivers. If it does, I'm hoping Colleen will direct us there. If it doesn't, it might be good to have one because for every person with a TBI, there is usually a loved one who is going through it with them. I've been a lawyer for 46 years, a civil rights lawyer for the last 25 years of that, and caregiving is the hardest, most taxing and draining thing I've ever done. It strips you down and shows you who you really are as a human being. Like you and your wife, we've really been through it, and the ignorance of the medical community where we live has just been shocking. It's easy to start feeling as if you're on your own.

I strongly recommend the book The 36-Hour Day. It's been a big help to me. I'm also reading to my wife The Body Keeps the Score, which is about the myriad ways in which trauma registers in our minds and bodies. It's been fascinating, informative, and oddly comforting. I'm happy to help, share with, and learn from you and all the other caregivers out there.

@margaretallen -- Hang in there. You are not alone. Things I have and have tried that have helped: deep breathing, meditation, compression blankets, exercise. We have two cats that make us laugh and keep us sane. I've tried to identify all the stressors in my life that I don't need and don't have to put up with and eliminate them. Those I have to put up with and can't control I try not to think about. Music is hugely important. Put on music you like and try to play along on a piano or guitar, or beat out its rhythm on your knees, or dance with a partner or just with yourself. Sing. Paint. I know you won't want to, because I've been there, but if you take that first step it can accelerate and develop a momentum of its own.

Hi, this is Cate from Atlanta. 78 yrs old and still working as a freelance court reporter, although reduced schedule due to post-concussion syndrome. In Jan of 2025 I had a serious fall at Walmart when the tip of my shoe caught on a piece of buckled aluminum. Fall was so severe it knocked hearing aid out of left ear, knocked pierced earring out of left ear, broke Apple watchband, unable to rise from pavement without assistance for almost 30 min, and on and on. Subsequently had to have left hip replaced because of fall. After surgery had 5 or 6 significant falls to left side and head, with 3 ER visits and 3 concussions and diagnosis of postconcussion syndrome by my neurologist.
Fortunately, all head CTs and MRIs were normal. I did need cognitive therapy after the last fall in January of this yr, 2026.
In addition to the physical challenges from the falls to my knees and hip and wrists, I experienced severe mental confusion, extreme fatugue, mind fog etc. At the time of my 1st fall was grieving the recent death of my spouse of 47 yrs, which complicated my mental symptoms.
I asked the neurologist how she knew it was post-concussion and not grief I was experiencing, or age decline, she said because she knew me prior to the falls and could see my changes. I also failed several routine neuro tests, i.e., remember 3 words, etc.
The most difficult aspects have been the extreme, all consuming fatigue, irritability and and brain fog, as I know I present to friends as composed and present. But it is all smoke and mirrors!! I feel that people don't and can't really understand how I'm feeling.

I have returned to work as a freelance court reporter , but at a greatly reduced work load, as I can't sit for long periods of time and it is very fatiguing to focus.
After excellent cognitive therapy and physical therapy I am learning to give myself grace, rest when I feel the need and not blame myself, and to be very mindful of my surroundings. BUT it is getting very, very old and I want my former self back!! Thank you all!

@nanacate
PS: I was fortunate that my falls did not result in serious headaches, other than the sutures to the back of my head and stitches to my chin.

@gablou17 thank you so much for all the advice I find the morning is the worst and I think it could be hormonal by night time and feeling pretty good. I listen to meditation podcasts and I see a therapist. I am also learning to let people know I am lying down and not feel guilty about it

@margaretallen ps. After 9 months of the surgery I get very tired still

Hi, @gablou17 - thank you for sharing about your wife's TBI and your experience as a caregiver for her. That is indeed telling that you say after being a lawyer for decades, caregiving is the hardest, most taxing and draining thing you've ever done.

You might want to check out this Caregivers support group on Mayo Clinic Connect https://connect.mayoclinic.org/group/caregivers/.

Will you share perhaps one thing you picked up from The Body Keeps the Score book you mentioned that has been informative or comforting to you?