Living Beyond the Diagnosis

There’s a line from The Shawshank Redemption that has always resonated with me: “I guess it comes down to a simple choice, really. Get busy living, or get busy dying.” Andy Dufresne’s words echo in my mind daily, serving as a poignant reminder of the choices we face, especially in the grip of adversity. For those of us battling Multiple System Atrophy (MSA), this choice is not just metaphorical but a literal crossroads we encounter every day.

The Daily Struggle

Living with MSA is a relentless challenge. The disease, a rare and rapidly progressive neurodegenerative disorder, affects multiple body systems, often leading to a loss of autonomic functions, motor control, and balance. As symptoms worsen, the temptation to surrender to the disease grows stronger. Yet, the fight against MSA is not just a physical battle but a mental and emotional one.

Choosing to Fight Back

When I was first diagnosed with MSA, I was overwhelmed. The future seemed bleak, and the prognosis was daunting. However, inspired by Andy’s words, I realized that surrendering to the disease would mean losing not just my health, but my spirit as well. I chose to “get busy living.” This decision led me to explore various treatments designed to ease the symptoms of MSA and improve my quality of life.

One of the most significant steps in my journey was joining the MyTrial program at Mass General Hospital. This program, in cooperation with the Harvard Biomarker Study, aims to develop disease-altering solutions for MSA. Participating in this program has given me hope and a sense of purpose. It feels empowering to contribute to research that might one day lead to a breakthrough for MSA patients worldwide.

Hope on the Horizon: Foralumab Intranasal Treatment

After extensive testing in May, it was determined that I might be a good candidate for the Foralumab Intranasal treatment. This novel therapy is set to begin in November and holds the promise of altering the course of the disease. The anticipation of this treatment brings a mix of hope and anxiety. There is no guarantee of success, but I am determined to fight with every ounce of strength I have left. If this treatment comes up short, I will not stop searching for other solutions. Giving up is not an option.

Inspiring Others

To my fellow MSA warriors and their caretakers, I say this: our journey is fraught with challenges, but we have a choice. We can either let the disease dictate our lives, or we can fight back with all our might. Being proactive in managing our health, trying new outside of the box treatments, and staying hopeful are critical steps in our battle against MSA.

Sharing our stories, supporting each other, and advocating for more research and better treatments can make a difference. We are stronger together, and our collective effort can pave the way for a brighter future for all those affected by MSA.

Conclusion

Andy Dufresne’s words have taken on a profound meaning in my life. Choosing to “get busy living” despite the relentless progression of MSA is a testament to the resilience of the human spirit. As we navigate this difficult journey, let us continue to fight, hope, and support one another. Together, we can face the challenges of MSA with courage and determination, refusing to let the disease define us.

To anyone reading this, whether you are battling MSA or caring for someone who is, remember: the choice is ours. Let’s get busy living.

~Coach~

#FuckMSA