Experiencing My Brain

In this discussion with Dr. Carmen Frede, DNP, AGACNP-BC, we get into many details of what brain injury is like. From the start of the injury to the many problems that unfold that make returning to "life before brain injury " not possible. Dr. Frede (Carmen) explains her different challenges and internal struggles, what it takes to work to improve, and how difficult it was to find help and support...

Wendy Lurrie is a brain injury survivor, she started a podcast called BestGuessistan. When I began listening to her podcast, her recordings ,and her energy captured some of the feelings I remember having like the WTF feeling about what had happened to my internal me plus the feeling that no one who is supposed to help really gets what I am dealing with.  I appreciate her  work to record these issu...

I met Mandi on LinkedIn. She had a podcast about brain injury called Brain Wellness, the Podcast with Mandi NP . When I learned that she had worked as a neurology nurse practitioner prior to her brain injury, I had to speak with her. One of the first things she told me was that having a TBI taught her so much that she had never learned about brain injury before. In this discussion, we got into man...

Adam is a brain injury survivor who had multiple brain surgeries to remove tumors, plus a traumatic brain injury, and gamma radiation treatment all from the age of 14 through his early 20s. Early on is brain injury journey he discovered how to use psilocybin in secret before his brain surgeries to deal with the mental and internal changes, the extreme emotions, and the absolute uncertainty that co...

This is part 2 of 2 part discussion with Dr. Maria Romanas, about her sever TBI that she had when she was 18 years old, and her journey to improve, learn how to manage her problems, and her education through an MD/PHD program. Across her story no one spoke about "brain injury," so she learned to push herself and deal with invisible problems without knowledge of actually having a brain injury. Mari...

The goal of the Experiencing My Brain Podcast is to interview people about their invisible brain injury problems. In this recording Dr. Maria Romanas MD/ PhD interviews me. I share about my TBI experiences and try to communicate the ways my symptoms manifested. I appreciate Maria's interest in my history and progress, because brain injury is so hard to deal with and so often misunderstood. In the...

In this discussion with Cynthia we both share this analogy of the 3D layered web for what brain injury feels like.  What that 3D layered web means, in my opinion, is that with brain injury your internal states have many brain injury problems that interconnect and influence one another and every moment of life. The layers are the different problems, the web is the interconnection. and it's 3D becau...

Maria is a severe TBI survivor that works as a therapist to help other brain injured people. She is also the co-host of the brain injury podcast called TBI TMI. Check out her podcast with Zach here: https://www.youtube.com/@TBITMIpodcast Maria has had a long recovery from a horrible accident and shares a great deal in this discussion, ways to think about unique to brain injury problems including h...

I met Zach through his brain injury podcast that he does with Maria called the TBI TMI podcast. https://www.youtube.com/@TBITMIpodcast In this discussion, Zack shares the details of his brain injury, he explains the various sensory problems he has to deal with and all the other life, work, and support problems that come up because of brain injury. The title of this episode - Self Talk, Extra Filte...

Michele is a brain injury survivor that has had two brain injuries with very different symptoms. She shares about these problems and much more in great detail. Michele created a large scale support network and worked tirelessly to support people with brain injury. For over a decade she truly lived on the front lines of brain injury support. There are multiple episodes on this podcast where the per...

Brain injury is invisible  and every brain injury is different so it’s not wonder this problem is so drastically misunderstood. If it’s your brain injury that is injured the problems are so horrible and the constant ways that other people don’t understand is a major burden. This is a compilation episode of 12 good examples if brain injury problems, explained by the person with the brain injury. Mo...

Finding Everyday Magic - A journey Of Hope And Healing Through Nature, is a brain injury book by Anessa Arehart. You can buy the book here:  ⁠https://findingeverydaymagic.com⁠ - Check out photos from Anessa's ongoing phototherapy nature walks here:   ⁠https://www.instagram.com/finding_everyday_magic_/⁠ Anessa's book is easy to read and full of amazing pictures. She describes in detail, her brain i...

With the improvement of brain injury problems, people talk about neuroplasticity, but the re-learning, re-building, re-gaining, and re-developing of what you injured after brain injury is a process itself that is difficult to do and difficult to explain.  In this discussion with Jamie MoCrazy we get into great details about her remarkable story and the road to improve what got injured in her. We d...

Alexithymia is a psychological condition characterized by an inability to identify, understand, and express one's own emotions. Alexithymia is very common with brain injury. In this podcast Debbie and I get into alexithymia. We also talk about alexithymia in the context of brain injury and all the other problems that stem from having an injured brain. Alexithymia is a state that is difficult to de...

This discussion with David gets into a lot of good brain injury concepts. The flow of analogies touch on many aspects of brain injury that I will explain and give examples with the hope that it can help the people around brain injured people learn more about what we are dealing with. "Getting kicked Off the Bench"- David explains how when he is slow to answer or pausing to “process” he is also fig...

With brain injury there is a “gap” between the invisible internal problems you are dealing with and what the outside world is aware of. It has been validating and helpful to speak with Janet because when it is your own mind that has been injured, the problems are not invisible to you. It is possible to have a “better," more accurate discussion about brain injury problems and all that connects with...

Unbrain injured simply means not brain injured. David and I met in a support group in Seattle, WA. We relate a great deal about the validation that a support group offers and what it's like to live with and manage so many invisible aspects of brain injury. The details are in the discussion. I like this episode because we get into invisible aspects of this condition in a way that can help others th...

This is the second podcast recording with Nick. Nick made the cover art for this episode ( https://linktr.ee/nicomedia ). Thrown away after a brain injury is a horrible abandonment that happens to many people after they are brain injured. When Nick shared this picture with me I was struck by the pain, the faces, the guy throwing out the trash bags. I asked Nick to make that guy a doctor, and inste...

Cognitive loss with brain injury is a unique symptom where the process of thinking (in all forms) just doesn't work. Not only is that type of injury strange and misunderstood, but the nature of the "effort" and "work" to regain, redevelop, and relearn how to think has to occur very gradually. It is a difficult and time consuming process on the scale of years. Linda has a great blog called - The Br...

The discussions across this podcast involve people sharing details of what they are dealing with, with brain injury. Of course we are talking about the invisible problems. Debbie and Scott reached out to me to talk about this stuff because they are seeing the similarities and complexity of such issues. I thank them for reaching out and being so willing to share their ideas, observations, and strug...

Leslie and I met at the first brain injury support group I ever tried. Listening to her stories, challenges, and brain injury problems, especially the "misunderstanding" that she faced over decades, helped me realize how people can be so different but still face similar invisible hurdles because of the nature of brain injury. That was one year before Covid isolation shut down all the groups that m...

Brain injury problems are truly hard to explain, but a person can become aware of, make-sense of, and navigate such problems. Does it even help if you can explain the unexplainable problems? Not if people don't listen and don't believe you. I met Moz in a support group about 2 years ago and felt the need to connect with her. Moz’s inner navigation skills, abilities to classify, characterize and ac...

Nancy is a good friend, we have known one another for several years, and met through the support groups. She had a sever brain injury when she was 3 years old, we discuss her issues and history in the first episode of this podcast. Much more comes up in this discussion https://open.spotify.com/episode/11WjpW7xaIlmHKw2QJbKau Nancy probably injured her neck in her first fall and that resulted in lim...

This is a great discussion about brain injury. Jenna shares about her overwhelming and strange problems, the fatigues, the difficulty finding help, the evolution and changes of her problems over time, also how isolating brain injury is when you are consumed by problems that are invisible to others. With the right help and interpretation of what she is dealing with, Jenna has worked to improve and...

In this discussion I speak with Dawn for the first time. Dawn and her 15 year old daughter had brain injuries in the same automobile accident. Her account is both heartbreaking and inspiring as her and her family have faced many challenges and continue to live, love, and work to manage the unique problems that come with two brain injuries. She has found purpose and meaning in helping others with b...