The misunderstanding that surrounds brain injury is the second biggest problem with brain injury, the first is of course is the brain injury. Marc explains his different brain injury problems very well in this recording.

Occipital neuralgia is injury to the occipital nerve, and of course he has as many other brain injury problems. Plus the stimulators he has to manage in order to function. It’s truly unimaginable and I am glad Marc could spell things out. 

The the misunderstanding that surrounds brain injury is how the outside world does not understand almost anything about brain injury, and Marc was able to find good doctors and relatively good medical care and rehab for his brain injury problems.

Marc's fight against the legal system in New York fully exposes this lack of understanding, complete discrimination, and intolerance for the needs, limits, and accommodations. Marc’s circumstances are not rare, many individuals who face full on anti-support after brain injury. There are many examples in this podcast.

It is amazing how much Marc has done fighting for disabled peoples rights from jail to start, both for people with brain injury and other disabilities. Plus he is fighting for completely reasonable accommodations, if people only understood the brain injury problems themselves.

What Marc is fighting is against that misunderstanding, injustice, and intolerance that surrounds the treatment of so many individuals with all kinds of disabilities. Here is an article about his advocacy work for the needs of people with disability and fight against unjust officials.

https://blackwestchester.com/former-new-rochelle-lieutenant-demoted-after-harper-drug-case-joins-putnam-county-sheriffs-office-resident-seeks-attorney-general-review/

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Experiencing My Brain is a podcast devoted to detailed discussions with brain injury survivors about their experiences, challenges, and the ways they have found to navigate their lives. These stories are important in helping the non-brain-injured world better understand the problems that come with brain injury.

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.

The  problems and the efforts Carmen shares can help others learn how to think about the invisible struggles that come with brain injury, also what kinds of supports people may need.

Before her brain injury Carmen worked as a nurse practitioner,  after she had her brain injury she went back to school to complete her doctorate in nursing practice (DNP) in order to help remedy the systemic problems that surround brain injury especially in the early stages when patients are first discharged.

I heard Carmen being interviewed on the the Brain Wellness Podcast by Mandi (who I interviewed on episode 40 of my podcast). I had many thoughts and questions, which led to this brain injury discussion.

Check out Carmen's book here: Wired Differently: Navigating Life After Traumatic Brain Injury.

https://www.amazon.com/Wired-Differently-Navigating-Traumatic-Injury-ebook/dp/B0GQP7HPWM

- Her approach can be very helpful for a person first encountering the invisible layers of brain injury, and working on ways to keep track of their own problems to find help and improve over time.

Here is the discussion with Mandi and Carmen on Brain Wellness, the podcast:

https://www.youtube.com/watch?v=JV-_gzO8ySo&t=546s

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Experiencing My Brain is a podcast devoted to detailed discussions with brain injury survivors about their experiences, challenges, and the ways they have found to navigate their lives. These stories are important in helping the non-brain-injured world better understand the problems that come with brain injury.

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 issues that are similar but different concepts, feelings, and ideas to document this invisible epidemic.

https://www.bestguessistan.com/

Wendy created BestGuessistan, as a place where our brain injury needs are met and accommodations are provided, without explanation. She describes many aspects to this land that fit brain injury very well if you live with a brain injury these ideas ring true.

BestGuessistan also refers to the idea that with brain injury everything becomes a best guess of what got injured, and ways to improve or even try to manage what you are dealing with .

There are many "similar but different" aspects of brain injury we discuss across this recording.

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Experiencing My Brain is a podcast devoted to detailed discussions with brain injury survivors about their experiences, challenges, and the ways they have found to navigate their lives. These stories are important in helping the non-brain-injured world better understand the problems that come with brain injury.

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 many important brain injury details. Mandi shared her primary and secondary brain injury problems, how these problems aggravated one another, her experience of hitting a wall of fatigue, her challenges in gaining awareness of her brain injury difficulties, and the emotional turmoil that came with it.

• Just the fact that we discussed “primary” versus “secondary” brain injury issues was a detail that is hard to come by.

PTSD and TBI also aggravate one another. Mandi used the gasoline and fire analogy to describe that interaction, and she shared how her struggles with PTSD after her brain injury improved with EMDR.

Overall, this discussion was full of important lessons, details, and concepts about brain injury that helped illustrate the nature of this condition and the challenges of recovery. Mandi shared openly about how the road to improvement after brain injury was anything but linear or easy. Despite the many struggles and the complexity of brain injury, she improved and continued to improve, while also educating and helping others with brain injury.

Here is the discussion I did on Mandi's podcast:
https://www.youtube.com/watch?v=jHQp3u4t02o&t=13s

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Experiencing My Brain is a podcast devoted to detailed discussions with brain injury survivors about their experiences, challenges, and the ways they have found to navigate their lives. These stories are important in helping the non-brain-injured world better understand the problems that come with brain injury.

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 come with having so many brain surgeries and injuries.

What Adam shares is both a remarkable and crazy journey.

We discuss many fascinating details of his experience and get into the internal change that come with his brain injuries, as well as the life lessons.

Adam's story provides insights into the ways that both psilocybin and brain injury alter a person mind and inner self. Changes that ultimately cannot me imagined or truly put into words.

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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 un brain injured world make sense of the problems that come with brain injury.

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Disclaimer:

The views and opinions shared in this podcast should be looked at as the views of brain injury survivors and not as medical or clinical advice. Always seek the advice of a qualified health care professional with any brain injury problem.

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.

Maria describes her accident, the grief of loosing a close family friend, and how her mother learned to "push her gently" to progress and help Maria regain what she could. Maria describes the ways she was driven to be the academic star she had always been, while at the same time facing strange inabilities with executive function and other capacities.

Maria is clearly brilliant. Yet throughout her education and career, her difficulties have often been misunderstood and attributed to stress, parenting, or forgetfulness, rather than recognized as bran injury problems. She also learned how to manage and improve her abilities in unique ways like "getting her cues" and managing her symptoms.

This story is both inspiring and education for anyone trying to better understand brain injury, and as a doctor Maria shares a lot of thoughts and ideas about brain injury (both in parts 1 and 2 of this 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.

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Disclaimer:

The views and opinions shared in this podcast should be looked at as the views of brain injury survivors and not as medical or clinical advice. Always seek the advice of a qualified health care professional with any brain injury problem.

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 first decade I was dealing with alexithymia with brain injury, so feeling anything about life with a brain injury was difficult if not impossible. I appreciate how Maria acknowledges that aspect of my process (most people don't get that). This discussion is evidence for me, proof that I have been through something most people don’t have a clue how to think about.

In part 2 of this discussion, I interview Maria, she lays out a lot about her brain injury journey, how she worked to improve after a crazy accident, what her main problems have been with a brain injury as she pursued her PhD and then MD, and so much more.

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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.

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Disclaimer:

The views and opinions shared in this podcast should be looked at as the views of brain injury survivors and not as medical or clinical advice. Always seek the advice of a qualified health care professional with any brain injury problem.

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 because it impacts so much of your internal states. 

Cynthia explains this interconnected web as much as is possible, and she shares a great deal. For example what her brain injury problems were like, what  "self care" looks like in terms of the importance of sleep, rest, proper diet, and exercise but of course this is "nervous system" care with brain injury. That distinction is pretty clear in this recording.

Cynthia explains her views on these factors and how self compassion and feeling her emotions when she needs to let that pressure out is a great perspective that can help others learn how to manage all the hardship that comes with brain injury.

Cynthia has a podcast called Moms With Concussion. She explains how she has learned to handle so much of brain injury as a single mother. I did an episode with her, we get into a lot of “unique” to brain injury topics. Here is a link to that discussion:

https://podcasts.apple.com/ca/podcast/navigating-the-complexities-of-brain-injury-with/id1728525928?i=1000729311455

Cynthia and I also discuss the evolution of brain injury and she explains, how she made effort to learn ways to manage and improve her concussion problems. That effort and concussion education is what helped shape her efforts to improve, it wasn’t just random that she got better, she had to work towards that goal.

This process that leads to improvement over time is something Cynthia lays out, and I agree with her strategies based on my experience. That is an important take away for anyone thinking about brain injury and what factors are important to help improve over time.

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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.

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Disclaimer:

The views and opinions shared in this podcast should be looked at as the views of brain injury survivors and not as medical or clinical advice. Always seek the advice of a qualified health care professional with any brain injury problem.

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 how hard it is to function in the early years, the value of routine, the value of doing 50% of what you plan (to avoid fatigue and over-exertion). We discuss her internal emotional state, feelings like her mind was not her mind, and her body was not her body, and so many other brain injury problems that are truly hard to imagine.

Maria's story emphasizes the importance of support and how seemingly small efforts in the beginning of one's journey can grow into larger abilities. Also the importance of breath work, working towards independence, and just getting a few things done each day. These efforts are immensely challenging after a brain injury.

We also discuss the progression and perspective changes that come with years of work to improve and make sense of one's own problems.

Maria did a great talk in my Building Brain Awareness talk series about sensory issues and how they interact with other brain injury problems like interaction with other people, and advocacy for brain injury. The interaction of brain injury problems is something that often goes unnoticed. Check that talk out here:

https://www.youtube.com/watch?v=xhbPRxF76ig&t=3212s

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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.

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Disclaimer:

The views and opinions shared in this podcast should be looked at as the views of brain injury survivors and not as medical or clinical advice. Always seek the advice of a qualified health care professional with any brain injury problem.

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 Filters, and the Value Of Finding Someone Who Gets It - refers to all the ways that Zach has had to adapt and learn how to manage his brain injury problems. We discuss what he has learned from his podcast cohost, Maria who had a sever TBI years before Zach.

I was a guest on the TBI TMI podcast and we discussed parenting challenges with brain injury.

https://www.youtube.com/watch?v=oWniiawxtng&t=258s

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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.

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Disclaimer:

The views and opinions shared in this podcast should be looked at as the views of brain injury survivors and not as medical or clinical advice. Always seek the advice of a qualified health care professional with any brain injury problem.