Experiencing My Brain

Every brain injury is different, but there are invisible layers to each brain injury experience that are often similar. It’s complicated to get to those layers and the similarities, but the perspective Chaandani shares here offers great depth to help others learn more about brain injury and what can help improve. In 2019, Chaandani had a brain injury, which led to years of invisible problems and struggles. She found ways to shift her mindset, to improve, and to regain her life back . She founded a business that helps clinicians integrate a patient-first approach to concussion treatment. Her company is called Return To Life. https://www.returntolife.ca/ Additionally, check out a panel Chaandani and I participated in about the impact of brain injury on mental health problems. https://www.youtube.com/watch?v=foy1cA7-H3Y&t=2581s - - - 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.

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/ - - - 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 - - - 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. - - - 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 - - - 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.