Living Beyond the Diagnosis

When I was first diagnosed with Multiple System Atrophy (MSA), I was told that there were no treatments and no cures. Every doctor visit, every article I read, hammered the same point home—MSA is a relentless, degenerative disease with limited answers. That could have been the end of the story, but I refuse to accept that. I’m not willing to just roll over while this disease takes away everything I’ve worked for, everything I love. So, I started to fight.

On June 1st, 2024, I began a new chapter in my journey with MSA, exploring therapies that most people have never even heard of. My days became filled with a regimen of CVAC (Cyclic Variations in Adaptive Conditioning), BEMER (Bio-Electro-Magnetic Energy Regulation), and Nuenerchi. The goal was simple: find anything, anything, that would relieve my symptoms. Conventional medicine might not have the answers, but that doesn’t mean there aren’t answers to be found.

A Turning Point: CVAC and Orthostatic Hypotension

One of my worst symptoms was neurogenic orthostatic hypotension (nOH). For two years, I couldn’t stand for more than a few minutes without feeling like my world was crashing down. Dizzy spells, fainting episodes, they became the norm. But then came CVAC. This high-tech pod simulates rapid changes in altitude, conditioning my body in ways that traditional exercise can’t. I had no idea if it would help, but after just a week, something incredible happened: I stopped having those episodes. No more fainting. No more dizziness. My nOH, which had dictated my every move, was finally under control.

For the first time in years, I felt free. Free to stand, walk, even just be, without the constant fear of collapsing. It was a massive victory, but it wasn’t enough. MSA is a multi-front war, and I needed to keep fighting on all fronts.

Adding SCENAR to the Arsenal

On October 1st, 2024, I added a new weapon to my arsenal—SCENAR therapy. SCENAR stands for Self-Controlled Energo-Neuro Adaptive Regulation, and it’s a device originally developed for the Russian space program. It works by sending electrical impulses through the skin, prompting the body to kickstart its natural healing processes. It’s not just a simple tens machine; SCENAR is designed to adapt its signals in real time, communicating with the nervous system and promoting balance within the body.

The hope? That SCENAR could provide some relief from the unrelenting attack MSA has waged on my legs and motor skills. The disease has made walking, once second nature, feel like wading through quicksand. My legs are weak, stiff, and unreliable, and I’m constantly aware of how much strength I’ve lost. But the beauty of SCENAR is that it’s designed to assist the nervous system in rebuilding itself—stimulating nerve function and potentially improving mobility.

I’m still early in the process, but I’ve learned from CVAC that these therapies take time. Patience is key. With SCENAR, I’m aiming for the long haul, hoping that over the coming months I’ll see improvements. Whether it’s a little less stiffness, a little more coordination, or just a few more steps each day, any win is a step forward.

Leaving No Stone Unturned

Look, I know how MSA works. There are no silver bullets, and nobody is promising a cure. But here’s what I’ve realized: giving up isn’t an option. If there’s a stone I haven’t turned over yet, I’ll flip it. If there’s a therapy out there that might help, I’ll try it. This disease is stealing my body, bit by bit, but I’ll be damned if I don’t fight back every step of the way.

SCENAR, CVAC, BEMER, Nuenerchi—none of them are traditional treatments, but then again, MSA isn’t your run-of-the-mill disease. If you’re reading this and you’re in the same boat—whether you’re fighting MSA or supporting someone who is—my advice is simple: don’t let this disease tell you there’s nothing you can do. There’s always something you can try, some way to push back, no matter how unconventional it may seem.

Finding Hope in the Fight

MSA takes a lot from us. It takes our independence, our mobility, and sometimes even our hope. But there’s one thing it can’t take unless we let it—our will to keep fighting. I’ve learned that the journey with this disease isn’t just about waiting for symptoms to appear; it’s about taking action, about finding hope in the therapies that might just work.

I don’t know what the future holds, but I know this: I’m not going down without a fight. MSA won’t get the best of me, and if you’re reading this, it shouldn’t get the best of you either. We may not have all the answers, but as long as there are therapies to try, stones to turn, and hope to hold onto, we have a reason to keep pushing forward.

Fuck MSA. Keep fighting.

~Coach~

This post is for all my fellow warriors, their caregivers, and families. Stay strong, stay hopeful, and never give up. We’re in this together.