MedPulse: My story. Our Questions. Your Voice.
Polls to Measure the Unmeasured - Where Personal Journeys Inform the Future of Neuro-Recovery.
Twenty-five years ago, my life was irrevocably altered by a Traumatic Brain Injury (TBI). A quarter-century on, the echoes of that accident still resonate, often in the quiet, persistent question: how has this event fundamentally changed me?
While the severe brain damage is undeniable, I grapple with an unsettling void – a profound inability to articulate my own transformation. I can't definitively tell you which personality traits faded, or which emerged. From my lived perspective, I feel like the same person before and after that almost fatal incident.
This isn't a simple oversight. It stems from a critical, enduring gap in our understanding. I frequently ask myself, and am often asked by others: If that accident never happened, would my professional path have been different? Would my circle of friends be larger or smaller? Would I be more or less social? Would I be more successfull in any variable I can think of?
The true worth of these "what if" questions lies in their ability to drive planning, innovation, problem-solving, and learning, rather than leading to unproductive worry or inaction.
These questions are not only for me but for millions of others worldwide suffering any brain related trauma. According to the NIH in 2021, there were 20,837,466 cases of head injuries worldwide, with 56.63% classified as moderate/severe.
Most TBI incidence happens >74 years age groups, nevertheless comparing the younger age groups cumulatively leads to the conclusion that TBI is a injury that can happen to anyone independent of age group.
When TBI happens to you before your 40’s you still have more than half of your life in front of you, therefore twice the ambition to claim it. You feel lucky or choosen for a second chance in life.
The almighty power kept you from leaving planet earth for a reason. That reason is fuel to your confidence for achieving the unthinkable. You are cenrtainly not alone. Success stories are found among a broad range of backgrounds.
TBI Lacks a Clear Long Term Recovery Path.
My personal experience has revealed a stark truth: the scientific and medical communities, for all their advancements have had remarkably little incentive to thoroughly explore long-term, nuanced relationships between brain trauma and overall behavior, personality, and life functioning.
There's a notable absence of robust, clear cognitive and neuropsychological metrics that could truly capture the intricate, long-term human outcomes of TBI and trauma.
This isn't to diminish incredible medical breakthroughs, but it is to highlight a systemic imbalance. The medical industry, driven by immediate needs and often by short-term interventions, prioritizes areas where returns are more readily apparent.
But here's the crucial point: We, the People living with TBI and trauma, along with the dedicated professionals who work tirelessly in this field, have every incentive to explore these uncharted territories. Our very livelihoods, our paths to recovery, and our future choices are deeply intertwined with understanding these long-term impacts. Short term affects long term and visa versa.
To live a meaningfull life, we as trauma survivors need to be able to determine what future life lays on us ahead and what we are capable of. If we want to be fully independent, we need to understand the root causes of our trauma and how that will influence behavior, career, relationships and all other factors that define life.
For trauma survivors, clarity on these relationships/causalities/influences can provide clarity on more effective recovery paths, inform crucial life decisions for ourselves and our caregivers, and ultimately, empower us to reclaim agency in our own narratives.
The narratives that drive R&D in the medical industry are completely different from the narratives that come from us trauma survivors. So why should we expect improvement?
We empower our future when the full story of our TBI injury is available, therefore it is worthwile investigating from the bottom up!
MedPulse: Your Tools for Discovery
In an attempt to illuminate the issues trauma survivors are struggling with we are launching MedPulse. This is a community based initiative dedicated to amplifying our collective voice, gathering essential insights, and sparking the critical conversations that can drive meaningful change for ourselves and our caregivers. It is going to be build and served as a decentralized knowledge platform for brain trauma recovery and care. By you & for you!
How are we going to do that?
Polls
Polls are the bedrock of MedPulse, offering a direct and immediate way to capture the collective sentiment and experiences of our community. In a landscape often lacking clear metrics for the long-term impacts of brain trauma directly valuable for the TBI Survivor to the TBI. Our anonymous polls provide crucial quantitative data. They're designed to swiftly measure datapoints important for TBI survivors, identify trends, and highlight common challenges and successes within the TBI and trauma recovery journey. Your fast input helps us build a powerful, undeniable picture of the lived experience.
Open-Ended Surveys/Questionnaires
Open-ended surveys and questionnaires dive deeper, inviting you to share the nuances of your story and insights. These are your opportunity to elaborate on complex experiences, articulate specific needs, and describe the subtle ways brain trauma influences life, relationships, and well-being. This qualitative data is invaluable for uncovering unexpected themes and providing rich context that often gets missed in traditional research, ensuring your full voice is heard.
"Ask Me Anything" (AMA) Sessions with Experts/Survivors
"Ask Me Anything" (AMA) sessions on MedPulse bridge the gap between our community's questions and the insights of those with deep knowledge or lived experience. These interactive sessions will feature a diverse range of guests—from leading researchers and clinicians in brain health to fellow survivors who have navigated significant recovery paths. It's a unique opportunity to gain direct answers, explore complex topics, and learn from the expertise and wisdom of individuals committed to advancing our understanding of brain trauma and recovery.
Analysis
Based on the first three tools of measuring an undeniably large amount of data becomes available. Where most money and research is currently going into the medical industry pushing the narrative around brain recovery and care, less time and investment is being reserved for TBI survivors and their stories themselves. Analysis from MedPulse provide unque insights on variables solely focused on TBI survivors.
Many more to come!!
How to Do This
The sole focus as of now is to come under the eyes of the TBI survivor. Therefore we need to reach the masses and thats not done overnight. Therefore if you know any TBI survivor, please invite them over to this substack for them to participate in the polls and other tools offered.
Dont expect polls straigth away as we need first to find a considerable amount of participants to make the polls reasonable to reflect the population.
We will do the same on other social media to reach the masses more quickly.
When you want to refer beyond substack, our social media profiles elsewhere:
To all TBI & Trauma Survivors and Caregivers:
Your experience is a vital metric: No one understands the true, lived impact of brain health challenges better than you. Your participation in our anonymous polls offers invaluable data, moving beyond anecdotal evidence to shape a collective understanding.
Find shared understanding: Connect with others who share similar experiences, contributing to a community that validates and supports.
Influence the narrative: Your opinions will directly inform our analyses, reports, and discussions, helping to highlight overlooked areas and push for research that truly matters to your lives.
To Medical Industry Professionals (Researchers, Clinicians, Therapists, Advocates, etc.):
Gain unique, unfiltered insights: Our polls will provide a direct "pulse" on patient and survivor perspectives, offering qualitative and quantitative data often missing from traditional research. Understand the lived experience beyond the clinic.
Identify unmet needs: Discover gaps in care, persistent challenges, and areas where current interventions may fall short, directly from those they are meant to serve.
Contribute to a vital dialogue: Share your expertise, challenge assumptions, and help bridge the gap between scientific knowledge and real-world outcomes. Your insights can help shape the questions we ask and the conclusions we draw.
Shape future research & policy: The aggregated data and discussions here can inform new research directions, advocate for policy changes, and improve long-term care strategies for brain health and trauma.
Having suffered severe TBI myself, personal sources that helped me to become the best version of myself:
Follow my personal survivors story by clicking here, having suffered severe TBI and the remarkable life story that brought me to where I am today.
Follow the Brain Recovery & Maintenance Protocol by clicking here, which is regularly updated with practical tips for long term brain recovery/maintenance care.
Follow MedPulse on TBI Rehab as it provides unique perspectives from TBI survivors and their stories.
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On Your Wellness!
Disclaimer
Everything written here is based on my own account, if not otherwise stated. I am not a physician, nor do I have a medical degree. I was patient with them and by following certain and consciously not following other advice from them I found my way to become the best version of myself. I am a TBI survivor and I am sharing my experiences. From my own perspective I know what works and what not. My own perspective is always well researched and I only use products and services that have worked for me. Having said that, TBI survivorship is dependent on the individual going through TBI and therefore each case is different. One size - Fits all solutions don't exist in this space.