Living Beyond the Diagnosis

Living with Multiple System Atrophy (MSA) is like walking on a tightrope, balancing between the reality of a challenging diagnosis and the desire to make the most of every moment. The knowledge that my body is slowly declining is a constant companion, but it’s not the captain of my ship. Instead, I choose to steer towards positivity, cherishing every hug from my family, every laugh with friends, and every sunrise that marks a new beginning.

I have witnessed so many of my fellow #MSAWarriors struggling with the fear and uncertainty of Multiple System Atrophy’s dark ending? Their comments on Social Posts and Chat Apps, dedicated to the community of Sufferers, are so focused on how this POS disease comes for our souls. They are missing the opportunities to accumulate amazing memories with Family & Friends and focusing on the possibilities of the science that is focused on a cure. First, they need to know “You’re not alone in this journey.” 🤗 Additionally they should know they can reach out for help within the community., We all get it and are willing to help.

The Race Against Time

The clock is indeed ticking. As someone with MSA, I’m acutely aware of the importance of time. There are experimental clinical trials out there – ATH-434, ION-464, TAK-351, and anle138b, each promising in their own right. But they are shrouded in uncertainty, delayed for various reasons, and might not be within reach for up to two years.

• ATH-434 aims to reduce the accumulation of alpha-synuclein, a protein thought to play a crucial role in MSA.
• ION-464 is exploring gene therapy options, a cutting-edge approach offering hope for a fundamental change in disease treatment.
• TAK-351 focuses on metabolic pathways, potentially slowing down or halting the progression of MSA.
• anle138b, meanwhile, is a compound that could interrupt the aggregation of harmful proteins in the brain.

However, to participate in these trials, one must be in the early stages of MSA and physically capable of handling the trial’s demands. It’s a race against time, and every moment counts.

The Trap of Despair

It’s easy to fall into despair when facing MSA. The end stages are indeed daunting, marked by increasing disability and dependence. Many in our community focus on this impending decline, leading to a life colored by negativity and depression.

But I refuse to let MSA define my life’s narrative. Yes, the physical challenges are real, and the emotional toll is heavy. But every day brings opportunities for joy, love, and connection. It’s about shifting focus from what we’re losing to what we still have and can enjoy.

Building a Community of Strength

This is a call to all my fellow MSA warriors: let’s band together, lift each other up, and be teammates in this struggle. We are #UnBreakable. We won’t let MSA steal our spirit and ruin our days.

• Embrace every day, even if it’s not perfect.
• Cherish every hug, smile, and kind word.
• Share your stories, your fears, and your triumphs.
• Support each other, in person or online.
• Be a beacon of hope, not just for yourself, but for others battling MSA.

A Message of Hope

In the face of MSA, I choose to live with hope and positivity. I may not have control over my diagnosis, but I do have control over how I respond to it. I choose to make my journey about love, resilience, and strength. I choose to be #UnBreakable and say #FuckMSA with a smile, embracing every challenge as an opportunity to show just how strong we can be when we face adversity together.

So, let’s not focus on the end. Let’s make every day count. Let’s live, love, and laugh with all our might. Because in the end, it’s not the years in our life that matter, but the life in our years.

~Coach~