Experiencing My Brain

Chris is the president of the Hypertrophic Olivary Degeneration Association (HODA), a group she started after not being able to find the right help, resources, support, and answers for her questions about HOD. She told me that she relates with a lot of the problems that come up in the other episodes of this podcast. It is fascinating how HOD symptoms can be so much like other brain injury problems...

This discussion with Melanie gets into a bunch of topics, what she describes triggered a lot in me, both emotionally and rationally, as I am still trying to make sense of that happens to ones' self with a brain injury. Thank you Melanie for opening up so much about your struggles and the craziness of your journey to restore what you lost. Below is a list of topics that come up in this interview, l...

I first got in contact with Nick through one of the many TBI support groups and Facebook and now we communicate pretty regularly. He is working hard to spread awareness of what his brain injury experience has been like and to build resources for others. Here is Nick's Blog, Archaeology of mySelf: Recovering from a Brain Injury.   https://medium.com/@Niknello/archaeology-of-myself-recovering-from-a...

This impromptu recording with Venesuia is short but so full of important ideas and perspective. I am thankful that we were able to capture this TBI centric discussion. - - - Experiencing My Brain is a podcast devoted to detailed discussion with brain injury survivors about their experiences, problems, and ways that they have found to navigate their lives. These stories are important to help the no...

Randy is a friend and person I have gotten to know in an effort to  talk about brain injury problems. He and I speak every week or so. He's also in EMB episode 13. For sure I have had more discussions with him than anyone else about brain injury stuff.  Looking back on these recordings I am try to get him to talk about the stuff we had already gotten into over hours and hours of discussion in the...

I like this episode because it's two strangers with brain injuries finding ways to share about the unique aspects of this type of injury. I met Tanya in one of the post concussion facebook groups and it took a long time until we actually spoke. We get into a lot of topics, like the strange nature of brain injury problems, making sense of such problems, managing the changes, and more. Leveling Up i...

I met Brad through one of the brain injury facebook groups and we began chatting about the nature of his problems. We found ways to further the explanation of his problems which was great because these topics are difficult to discuss. After his brain tumor was removed Brad was diagnosed with a rare condition called Hypertrophic Olivary Degeneration (HOD). The olivary nuclei are brain regions locat...

Julie has had 5 brain injuries in her life, occurring in 1970, 1975, 1980, 1987, and 2017. She has experienced problems and setbacks that most people cannot even imagine but they are all too real. Some examples include the feelings of not caring, being wild, loosing your mind, feeling levels or your own consciousness get lost and then return, dealing with fatigue that is so overwhelming you cannot...

I contacted Weeks to talk about the slow effort of rebuilding a mental capacity that was once "automatic" in her mind. I had no idea how much experience she had navigating through other invisible illnesses and her views on the importance of mental health and sleep to help recovery. We spoke a lot about the grief that comes with brain injury, and how the different levels of "invisible" healing inte...

Randy is a brain injury survivor I have been speaking with for years. We share all types of ideas and experiences. Even so the details we relate can be difficult to make sense of. No two brain injuries are alike, but the brain injury parts can be shockingly similar. The passage he reads at the beginning of this recording is called Lessons From The Damned II, and the author is not known to us. A co...

Justin suffered a brain injury that has drastically deteriorated his visual perception in unique ways. He has been fighting to maintain his life, to continue working, and to retain his independence. However the setbacks that are so common with brain injury have made his internal problems too overwhelming. On top of these inner struggles, being misunderstood by others only adds to the difficulties...

Although every brain injury is different and every person is different, there are parallel in our experiences and struggles. Rob describes many creative ways he has found to manage himself and his brain injury problems. He also shares his experiences with exercise, therapy, and how having a supportive and understanding partner are all so important in the long road or improvement after brain injury...

Patrick opens up about the inner struggles he has faced as a result of repeated concussions. His multiple brain injuries create different problems that he is acutely aware of. Patrick and I talk about the self monitoring and the fight to even begin to restore what he has lost.  Patrick shares the perspectives he has gained from Dr. Clark Elliot's book The Ghost In My Brain, and some of the cogniti...

In this follow up discussion with Asher, we get into many more brain injury problems that she has faced and what she has done to try and overcome these strange and difficult issues. The final question that Asher asks is truly important for brain injury and concussion survivors. It is a topic that I plan to follow up on in the near future. Experiencing my brain is a podcast devoted to in depth disc...

I met IyoLu in person at a brain injury support group before covid isolation. He is a deep thinker with clear awareness of what he has had to deal with. The more I got to know him the more I realized he has great depth to his emotional awareness. I have tried to emulate and learn from him. In a separate discussion, IyoLu shared that a major problem he experiences is with regulating his executive f...

Asher is someone I knew before and after her major brain injury but I had no idea what she was actually dealing with. I appreciate her willingness and ability to share about the specifics of her problems so clearly and honestly.  Experiencing my brain is a podcast devoted to in depth discussion with brain injury survivors about their problems and ways they have learned to navigate life. 

Experiencing my brain is a podcast devoted to in depth discussion with brain injury survivors about their experiences, problems, and ways they have learned to navigate life. I met Nancy through one of the online brain injury support groups. She had her first brain injury when she was 3 years old and shares a great deal about the unique challenges she has faced and the perspective she has developed...