What is Life Like After a CTE Diagnosis? | Patient Perspectives | Being Patient
Вставка
- Опубліковано 17 лип 2024
- Steven Barbieri was active in martial arts for most of his life. But when he started experiencing lapses in memory in his early 50s, he knew something was off.
Chronic traumatic encephalopathy, or CTE, is a type of dementia caused by repeated traumatic brain injuries, often from contact sports.
As part of the Being Patient: Perspectives Live Talks series, Steven shares his experience with CTE - from when he first noticed something was wrong, to diagnosis and self-care.
Access more Perspectives talks here: bit.ly/2PUWZRk
To catch our Brain Talks live, join our Facebook page: / beingpatientalzheimers
For the latest news on dementia research and lifestyle tips, visit our site: www.beingpatient.com/
Our mission is to give people impacted by dementia a better resource and connection to experts at the forefront of research. Our founder Deborah Kan funded Being Patient solely with her own savings to understand if people would value such a resource. Our audience has grown so rapidly, we have exciting plans for the future to enhance our coverage even further but we need your help. Please consider making a contribution to help fund Being Patient's editorial costs. We employ a team of journalists to give you the best possible information on dementia and brain health without bias.
My docs think I'm in the early stage 4. When it all started I was doing the same things like easier to freak out and get angry and I didn't notice it but everyone else would. Now I'm to the point that walking on my own is difficult as well as having a very hard time communicating and forgetting what I was talking about mid sentence and then have no idea what I was even talking about. There are multiple other things including organs starting to shut down in alphabetical order and they attribute it to the communication between my brain and my organs. I also trained in martial arts, I trained and fought Muay Thai for 20+ years as well as multiple tbi's including a car accident that fractured my face like a spiderweb and fractured 14 teeth. I have to thank my amazing wife for helping me do this comment as well as keeping me wanting to continue to keep going and keep fighting this horrible thing called c.t.e my pituitary gland is also atrophied with a couple of non-operable tumors on it and now I also have chiari malformation type 1 now as well to add to it. I am very lucky to also have a best friend who had to retire early from the NFL due to his c.t.e as well. He's not as far along as I am and he's worried about advancing and the fact that he might lose me to it and feels blessed that we have such a close relationship and I feel the same way! I belong to a few online groups for support that helps some times when I can remember that I have that outlet although it is rare that I remember that but my friend and I communicate everyday through texting mostly as he lives in Vegas and I'm originally from there too but now I'm right outside of Boise with an amazing medical team that I couldn't get in Vegas even though it is the fight capital of the world. Ok sorry for rambling I appreciate you for educating people about c.t.e!
Have you ever been knocked out? How many fights do you have?
Can you please consider doing follow ups of the patient perspectives interviews? Thanks!
Thanks for this valuable information
Wonder what stage is he acording PET scan