Living Beyond the Diagnosis

Living with Multiple System Atrophy (MSA) is a daily challenge that profoundly impacts every aspect of life. MSA, with its myriad symptoms, relentlessly limits our mobility, often confining us to our homes. Simple tasks like walking become monumental feats, and the very thought of stepping outside can induce anxiety. For those of us grappling with MSA, the outside world can feel like an inaccessible dream.

MSA doesn’t just affect walking; it curtails our freedom to venture out, socialize, and experience life beyond our four walls. The constant worry of falling, the need for frequent rest, and the struggle to find accessible bathrooms make leaving the house a daunting endeavor. It’s not just the physical limitations but the emotional and psychological toll that can weigh us down.

I want to share my story, not as a solution for everyone but as a beacon of hope. After much deliberation and consideration, we invested in a Class B Coachman LI3 van, affectionately named “VanGo.” This van has revolutionized my life, offering a newfound sense of freedom and security.

“VanGo” – My Mobile Sanctuary

The decision to purchase “VanGo” was not taken lightly. It was an investment, both financially and emotionally, but one that has paid off in ways I couldn’t have imagined. “VanGo” is more than just a vehicle; it’s a mobile sanctuary that has transformed my experience with MSA.

The Benefits of “VanGo”

1. Safety and Accessibility
   • The small space inside “VanGo” is a boon for someone like me who struggles with balance and mobility. The risk of falls is significantly reduced, and the layout is designed for ease of movement.
2. Convenient Bathroom Facilities
   • One of the biggest challenges when leaving home is finding an accessible bathroom. “VanGo” comes equipped with a convenient bathroom, removing this major stressor from my outings.
3. Comfortable Resting Place
   • Fatigue is a constant companion with MSA. “VanGo” provides a comfortable place to lie down and rest whenever I need to, making longer trips feasible and more enjoyable.
4. Emotional Well-Being
   • The ability to leave the house without the looming fear of “what if” has done wonders for my mental health. “VanGo” has allowed me to visit friends, go on short vacations, and even just enjoy a change of scenery, which has been incredibly uplifting.

Adventures with “VanGo”

Whether it’s a simple trip to the tennis club to watch a match, a visit to a friend’s house, a vacation to wine country, or traveling to see family in other states, “VanGo” has been a faithful companion. The ability to travel with a safe and comfortable space has opened up opportunities I thought were lost forever.

“VanGo” has become a cherished member of our family. It’s not just a van; it’s a symbol of the freedom and joy that MSA tried to take away from me. Every trip, no matter how short, feels like a victory over the limitations imposed by this condition.

Sharing My Experience

I hope my story resonates with others facing similar challenges. While “VanGo” represents a significant investment, the value it has brought to my life is immeasurable. I’m not offering financial advice but rather sharing my personal journey and the profound positive impact this decision has had on my daily life.

For anyone considering such an option, I encourage you to explore it thoroughly. Speak to others, assess your needs, and make an informed decision. Remember, it’s about finding what works best for you and reclaiming some of the freedom that MSA tries to steal from us.

Living with MSA is undeniably hard, but with the right tools and support, we can find ways to navigate this challenging path. “VanGo” has been a lifeline for me, and I hope that sharing my experience might inspire others to find their own solutions to enhance their quality of life.

Stay strong, keep exploring, and never lose hope.

~Coach~