Episode 20. Honey You're Not Getting Enough Juice To Your Brain. Second Discussion with Nancy

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 discussionhttps://open.spotify.com/episode/11WjpW7xaIlmHKw2QJbKauNancy 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 pressure feeling, and how it interconnects with other problems are good examples of the unique and interconnected nature of brain injury problems.Nancy needed an MRI scan done when she was not laying down to show the CSF flow problem, for over 60 years she did not receive the right help and had to search until she finally found a clinic that runs the MRI while the subject is standing up. She had to travel across the country alone and finally had the first surgery, probably she will have a second surgery, but with that one surgery she has experienced a great deal of change and improvement in her brain function.While I was editing this episode I attended two brain injury talks that capture the types of problems that Nancy describes in terms of the harsh misunderstanding and judgement about her problems:- First was a presentation by BIAWA in which Maria Dalbotten a mental health therapist spoke about the impacts of sensory sensitivity. Maria said (51 minutes into this talk) “When a person is self advocating, it can be tempting to explain why we need something." She said “It seems important to get other people to understand what you are dealing with,” but, “don’t focus on getting the health care providers to understand. Instead of the story, think of what do you need.” After all“We are the ones that know what we need, the world around is not going to understand what we are dealing with.” https://www.youtube.com/watch?v=UzeL5pkauqs&t=35s-Second was a talk in the building brain awareness (BBA) series. Dr. Karen McAvoy, PsyD. Karen spoke about the nature of brain injury problems and about when healthcare providers misunderstand and misjudges brain injury (~47 min into the talk) they adopt a "punitive" attitude towards the brain injured person, as well as how to reform that attitude. https://www.youtube.com/watch?v=nSQ2xr-vD3YThis discussion with Nancy perfectly exemplifies both these issues and despite every brain injury being different, the way brain injured people are treated is often the same and needs to be changed. In addition to the misunderstandings Nancy explains in great detail the nature of her problems and how they changed with the right help, diagnosis, and surgery.Episode cover art - Contents Overflowhttps://linktr.ee/nicomedia- - -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.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.