Terminal Diseases
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Post 3 in a Series: My Journey with MyTrial – The First Steps Foralumab & Exenatide
After completing the initial battery of tests, my doctors identified two potential treatments to kick off my journey with MyTrial: Exenatide, a GLP1 agonist, and Foralumab, an anti-CD3 monoclonal antibody. Let me share why these treatments were chosen and what the doctors had to say about them. Continue reading
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Post 3 in a Series – Finishing Up Month 1 of CVAC Therapy: A Six-Month Treatment Diary
In these final weeks of my first month, my body has undergone significant changes. At the lower levels of CVAC therapy, my cells have been experiencing a greater flushing of metabolic waste and inflammation. It’s like a deep cleaning for my cellular system, and I’ve definitely noticed some peculiar changes. Continue reading
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Post 2 in a Series – My First 2 Weeks of CVAC Therapy: A Six-Month Treatment Diary
As I continue this CVAC therapy journey, I am excited to share my progress, or lack thereof, with you all. While it’s still too early to draw definitive conclusions, the initial signs are promising. These sessions have already contributed to an improved sense of well-being and a slight enhancement in my physical abilities. Continue reading
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Embracing Father’s Day with MSA: A Journey of Love, Hope, and Family
Now, with MSA as a constant companion, the time I spend with my wife, kids, and grandkids has taken on an even deeper significance. These moments are what I live for. Each smile, each hug, each shared story is a precious gift. Time has become the most precious commodity, and I cherish every second. Continue reading
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MyTrial – Day 3 pm Agenda Part 1 – A Journey Through Hope: Navigating Neurodegenerative Disease: Participating in the CLIMB Study
Understanding the immune system’s role is crucial, as it can help determine how inflammation might contribute to the progression of MSA. This kind of data is invaluable for developing new therapeutic strategies and potentially slowing the disease’s progression. Continue reading
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MyTrial – Day 2 am Agenda Part 2 – Navigating Multiple System Atrophy: A Journey Through the Longitudinal Study
Longitudinal Neuroimaging – Functional magnetic resonance imaging (fMRI) investigations of a longitudinal nature, where participants are scanned repeatedly over time and imaging data are obtained at more than one time-point, are essential to understanding functional changes and development in healthy and pathological brains Continue reading
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MyTrial – Day 1 pm Agenda – Navigating the Journey: My Experience with a PBR06 PET Scan for Multiple System Atrophy
The PBR06 PET Scan is a specialized type of imaging that uses a radioactive tracer called PBR06 to visualize inflammation in the brain. PET stands for Positron Emission Tomography, a technique that helps doctors see how tissues and organs are functioning. Continue reading
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MyTrial Experience: Charting a New Path in MSA Treatment
“deep phenotyping,” and it involves tracking our disease progression with various clinical measurements, including biometrics, biomarkers from blood and spinal fluid, and advanced brain imaging techniques like MRI and PET scans. Continue reading
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“The Heartbreak of Hope: Navigating the Clinical Trials of MSA”
However, the reality is often far from hopeful. Each trial brings with it a cocktail of anticipation and anxiety, only to be met with disappointment and despair as we witness the lack of statistically relevant results. Our hopes rise and fall with each update, each email that brings news of yet another setback. Continue reading
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“Finding Purpose Amid Social Media Fatigue: A Perspective from an MSA Warrior”
For those battling social media fatigue, the incessant reminders of life’s fragility may seem overwhelming, burdensome even. Yet, within the echo chambers of our online spheres lies a beacon of light Continue reading
Living Beyond the Diagnosis 