Shows
Experiencing My BrainRe-learning, Re-building, Re-gaining, Re-developing After Brain Injury. Discussion with Jamie MoCrazyWith the improvement of brain injury problems, people talk about neuroplasticity but the re-learning, re-building, gaining, and re-developing of what you injured after brain injury is a process itself that is difficult to do and also difficult to talk about. In this discussion with Jamie MoCrazy we get into some great examples and details about the road to improve what got injured internally after brain injury. We discuss how difficult the work and effort is to actually “chip away” and improve those invisible brain injury problems. To get the neuroplasticity to happen a great deal...2025-03-071h 05
Experiencing My BrainInjuring Emotions. An Alexithymia Discussion With Debbie.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 describe. It feels like feelings are not a part of you or don't exist.
This is the second recording with Debbie. Her and her husband...2025-01-221h 27
Experiencing My BrainThe “Kicked Off the Bench / Swamp / Moving Through a Swamp / Boat / Getting Pulled Behind a Boat” - Analogy. Second Discussion With DavidThis 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 fighting against his memory and attention problems, people just cut him off, it’s like kicking him off the bench. I have...2024-12-101h 34
Experiencing My BrainTwo AVMs & One Gamma Knife. First Discussion With Janet. Experiencing My Brain. Episode 27.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 others about these issues. Thank You Janet.
We capture a lot here about the alienation and isolation that comes with brain injury. Also we tal...2024-11-131h 07
Experiencing My BrainExperiencing My Brain. Episode 26. Moving Through an Unbrain Injured World. First Discussion With DavidUnbrain 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 think about brain injury.
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Experiencing My...2024-09-2756 min
Experiencing My BrainExperiencing My Brain. Episode 25. Thrown Away After Brain Injury. Second Discussion with NickThis 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 instead he stuck that “MD” badge on his chest.
Here is the first podcast with Nick.
2024-07-311h 03Experiencing My BrainExperiencing My Brain. Episode 24. A Seventeen Year Brain Injury "Recovery."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 Brain Fairy - Living with Brain Injury. She writes about the nature and unique details of brain injury to help build awareness of...2024-06-251h 08Experiencing My BrainExperiencing My Brain. Episode 23. Can We Get Others To Get "It"?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 struggles.
I greatly appreciate that they even listen to my ideas about brain injury. Here are those ideas explained across a few talks...2024-06-131h 16Experiencing My BrainExperiencing My Brain. Episode 22. The Blurb.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 met in person.
Leslie and I were also part of an online support group called Synapse, at the University of Oregon. That group...2024-02-2140 min
Life Gets MoCrazyGrieving is Necessary. Daniel Avesar, PhD. is Creating a Better Understanding of Brain Injury and RecoveryDaniel Avesar, PhD. suffered a severe traumatic brain injury when he was 18 years old. This injury required him to recover and to regain his cognition, his mind, and his lost inner self. After 11 years of recovery, he became obsessed with making sense of what happened to my mind. He later received a PhD from Dartmouth in neurophysiology and later a postdoctoral research position at the University of Oregon, at a systems level neuroscience. He uses his own experiences and neuroscience background as a template to unpack and promote ideas about the invisible nature of Brain Injury problems. D...2024-01-2623 minExperiencing My BrainExperiencing My Brain. Episode 21. Does It Even Help If You Can Explain The Unexplainable? 1st discussion with MozBrain 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 act mentally to compensate for her invisible injures is remarkable. She has had not had support, and many times the opposite of support since her TB...2023-12-102h 01
Experiencing My BrainExperiencing My Brain. Episode 20. Honey You're Not Getting Enough Juice To Your Brain. Second Discussion with NancyNancy 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 limited cerebrospinal fluid flow (CSF) to her brain, that problem created a very specific feeling of pressure in her head. That p...2023-09-091h 16Experiencing My BrainExperiencing My Brain. Episode 19. Put the Music in the Background. 1st discussion with JennaThis 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 regain her life back. We get into detailed discussion of the 'baby step' nature of working to restore what was once automatic in your mind, and how hard it is to explain all...2023-04-271h 38Experiencing My BrainExperiencing My Brain. Episode 18. Finding Meaning and Hope After Brain Injury. 1st discussion with DawnIn 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 brain injury by promoting awareness of the difficult and personal aspects of this condition.
Dawn has a blog about brain injury and has written an...2023-04-151h 19Experiencing My BrainExperiencing My Brain. Episode 17. Can't Find The Right Help For Your Rare Brain Disease? DIY discussion with ChrisChris 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, and like with brain injury there is plenty of variability between each person.
I appreciate her openness to share about her experiences and her a...2023-02-231h 03Experiencing My BrainExperiencing My Brain. Episode 16. Is There A Recipe For Recovery? 1st discussion with MelanieThis 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, like “parallels” that come up again and again in discussion with brain injury survivors.
- Brain injury comes with many problems - Mo...2023-02-011h 56Experiencing My BrainExperiencing My Brain. Episode 15. Injury To What Makes 'The Self,' Literally. 1st discussion with NickI 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-brain-injury-e2909b96f86f
The brain networks underlying different aspects of self are pretty well known. https://en.wikipedia.org/wiki/Neural_basis_of_self
A book that get's into the ways the brain c...2023-01-0736 minExperiencing My BrainExperiencing My Brain Episode 14. Riding The Waves Of Brain Injury. Discussion With VenesuiaThis 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.
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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 non brain injured world make sense of the problems that come with brain injury.2022-12-0119 minExperiencing My BrainExperiencing My Brain Episode 13. Attempts To Capture What We Are Dealing With. Early Discussion With RandyRandy 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 the support group, so the discussion sometimes repeat and some topics present themselves in bits and pieces. I agree wi...2022-10-3053 minExperiencing My BrainExperiencing My Brain Episode 12. Leveling Up Discussion with TanyaI 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 is just one of many issues we tackle.
"Leveling Up" is a feeling that all of a sudden some parts of you, t...2022-10-111h 20Experiencing My BrainExperiencing My Brain. Episode 11. The Serenity Prayer and Beyond. First discussion with BradI 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 located bilaterally in the medulla oblongata that contribute to all types of brain functions including motor function and other basic activities.
https://rarediseases.org/gard-rare-disease/hypertrophic-olivary-degeneration/
It's easy to get...2022-07-291h 04Experiencing My BrainExperiencing My Brain. Episode 10. Square Peg In A Round Hole. First discussion with JulieJulie 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 do anything, vertigo, dizziness, being an adult stuck in a child-like state for years and pulling yourself out, enduring horrible treatments, and gaining various forms of inner-awareness that come with each battle for recovering one more part...2022-07-211h 01
Experiencing My BrainExperiencing My Brain. Episode 9. Healing Laminated With GriefI 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 interplay through the brain injury recovery process.
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Experiencing My Brain is a podcast devoted to detailed discussion with brain injury survivors about their experiences, problems...2022-05-021h 48Experiencing My BrainExperiencing My Brain. Episode 8. Loss of Self With Brain Injury. Discussion with RandyRandy 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 copy of the passage is below.
- If any one knows the author I w...2022-02-1550 minExperiencing My BrainExperiencing My Brain. Episode 7. Injury to visual perception. 1st Discussion with JustinJustin 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 of brain injury. This discussion is also a good example of how the common mentality most people have to just "push through" challenges using force and grit doesn't exactly work for brain injury. His descriptions of...2022-01-2534 minExperiencing My BrainExperiencing My Brain. Episode 6. Managing the problems that come with brain injury. 1st Discussion with RobAlthough 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.
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.2022-01-1139 minExperiencing My BrainExperiencing My Brain. Episode 5. Levels Upon Levels Of Invisible Struggles. Discussion with PatrickPatrick 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 cognitive exercises that he has been working on in therapy with Dr. Donalee Markus.
Experiencing my brain is a podcast devoted to in-depth discussion w...2021-12-2056 minExperiencing My BrainExperiencing my Brain. Episode 4. The big question with brain injury. 2nd discussion with AsherIn 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 discussion with brain injury survivors about their experiences, problems, and ways they have learned to navigate life.2021-12-0831 minExperiencing My BrainExperiencing My Brain. Episode 3. My crying coach. Discussions with IyoLuI 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 function.
Experiencing my brain is a podcast devoted to in depth discussion with brain injury survivors about their experiences, problems, and ways t...2021-11-2939 minExperiencing My BrainExperiencing My Brain. Episode 2. Life with those invisible problems. 1st discussion with AsherAsher 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. 2021-11-2638 min
Experiencing My BrainExperiencing my brain. Episode 1. Planting a seed. 1st discussion with NancyExperiencing 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. 2021-11-2357 min