Parkinsonism
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Don’t Just Exist—Live. A Lesson from Someone Who’s Running Out of Time.
I’m dying. My future is set, and it is not long. But you? You still have time to do more than just exist. You have time to make your days count. Continue reading
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Living with MSA: The Hidden Weight of the Simple Question ‘How Are You?’
You see, I have Multiple System Atrophy (MSA). Every day feels like I’m walking closer and closer to the end. The motor skills, the balance, the dizziness, the fatigue — all of it is a reminder that my body is slowly betraying me. And yes, it scares me. It scares me a lot. But when… Continue reading
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When is the Right Time to Say “This Might Be the Last Time We See Each Other?”
I often find myself wrestling with a question that seems to linger on the edge of my mind, sometimes coming in the quiet hours of the night or in a rare moment of clarity during the day: When is the right time to say, “This might be the last time we see each other?” 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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The MyTrial Series – Home From Boston and Still Testing – The Accelerometer Home Evaluation
This detailed analysis provides a comprehensive view of my motor function, helping researchers quantify gait abnormalities, track disease progression, and develop tailored treatment plans. 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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Post 1 in a Series – CVAC Therapy and MSA: A Six-Month Treatment Diary
Starting any new treatment can be both exciting and nerve-wracking, and my first appointment at Ascent Adaptation & Regeneration was no different. The process began with a comprehensive cellular integrity (Bio-impedance) analysis, a vital step in understanding my cellular health. 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 – Day 1 am Agenda – Understanding SY08 PET Scans in the Diagnosis and Management of Multiple System Atrophy (MSA)
MSA can be difficult to distinguish from other disorders such as Parkinson’s disease. SY08 PET scans can reveal characteristic patterns of brain activity that help differentiate MSA from other neurodegenerative conditions, enabling a more accurate diagnosis. 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
Living Beyond the Diagnosis 