Friends and survivors -- I am posting this on behalf of my wife. We just found this chat room this morning and it has already been very helpful.
My wife had suffered concussions in the course of years of horseback riding. She had severe reactions to both her Pfizer Covid shots in the spring of 2021, then suffered a TBI when a guy crossed the yellow line and hit her a year later, in the spring of 2022. She had to retire from the practice of law, no longer drives, and is unable to navigate the constant distractions and complications of using digital devices like laptops and cellphones. Immediately following her accident, she was extremely sensitive to light and loud sounds, which has improved. She wore prismatic glasses for a time but no longer needs them. She struggled to read but that is improving as well. Her primary problems now are aphasia, a lack of volition, and anxiety. As a formerly high-performing professional, she struggles to accept her new "you," but she's determined to get better and we're relentless in our pursuit of that goal.
The ignorance of the medical profession concerning the issues adults experience with TBI or post-concussive syndrome is appalling. For two years, my wife labored under a diagnosis of Alzheimer's despite the absence of key symptomology until a DNA test and the new Alzheimer's blood test proved she didn't have it. Sadly, our experience is that if a woman in her late 60s complains of confusion and memory issues, the first assumption is Alzheimer's which creates a confirmation bias among treaters that is hard to overcome. All of my wife's progress is the result of our own independent research and pushing for answers. The Mayo Clinic is obviously years ahead of everyone else and it's terrific that they've provided us this forum for expression and connection.
I want to thank everyone who has posted on this site. You're are all heroes, and know that because of you my wife and I are having a better day. I hope our post helps, too. The more we talk about this the better. This needs vastly more attention from the medical profession than it gets. In the meantime, never forget:
1. You are not alone.
2. Speak up for yourself.
3. This is a long slog; hang in there and keep pushing.
We're all rooting for us, and more are joining us every day.
@gablou17
welcome to the group, or groups you've been steered toward. What an awesome amount of talent and place to ask your questions. i am a survivor of TBI also mine was like yours numerous injuries over time and finally the day i was hospitalized with a brain tumor of large proportion and cancerous, alongside lung cancer. operated in the brain twice, last time was a brain bleed. but like your family a fighter i am. i fight to stay alive for my daughter and her family, i may have some answers to questions so feel free to ask them. In march of 24 was my time to have this all found. now cancer free and every test coming back with good numbers, hardest thing for me and still is, that awful anxiety and depression but the brain heals such to be blessed with. the time to rewire seems like forever, I've just learned some things that help. have a blessed day, you are not alone by any means. feel free to message me.