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Donít Mess With Us - Weíre Fighting MSA
By: Candice

Suddenly my world changed.  My mom was diagnosed with a terminal disease that was unknown to many doctors. Fearlessly, I stood with her; not only as her daughter, but as advocate, cheerleader, and caregiver. While my mom fights her disease, I fight by her side, making sure she has the care she needs.

Six months ago, my father and I sought advice from my mother's neurologist. She had already been diagnosed with multiple systems atrophy (MSA) in 2009, but her symptoms were getting worse. She began passing out regularly and took more than twenty minutes to regain consciousness. He immediately suggested having her assessed for hospice to help support our family.

When hospice arrived and explained their services, we learned there was no assessment; the referral was all that was needed. In addition, with this service, the hospice neurologist (who had no prior experience with MSA or anything similar) would manage my motherís condition. Immediately, we knew this wasn't right. It wasnít time for palliative care. It was time for action. Her doctor might have been ready to give up, but we werenít.

That day, I went from caregiver to fearless caregiver. I called everywhere until we found a neurologist who was experienced in MSA and willing to fight for my mother. This new doctor confirmed that not only was she NOT in need of hospice; there were new medications and treatments to try! Best of all, his bedside manner was uplifting and motivational. He became my mother's cheerleader and support. 

Despite his efforts, my motherís motor coordination continued to degrade and I had to admit to desperately needing help. We called on our family.  Eagerly, they stepped up and learned how to move her safely, her medication regime, and more. Having had the courage to ask for help means I now had the time to mentally recharge my batteries.  We support each other and share beautiful moments with her. And, most importantly, my mother enjoys spending time with her family.

My mother is my hero. Every day, she fights MSAóa rare neurological disorder with no cure. I watch as it slowly, but surely, impairs her body's autonomic functions, including blood pressure and digestion. She also suffers from Parkinsonian symptoms, such as muscle rigidity and poor balance. As I watch her fight, I am driven to stay strong and healthy. I know that caring for my own physical and mental strength is what allows me to be an effective caregiver.

Some days are hard. And others are harder. I want to cry because my best friend, my mother, is suffering greatly.  I want to explode because there is nothing I can do to make this go away. When I am physically and mentally exhausted, I count my blessings:  my dad, my rock; my mom, with her contagious smile; and my family, that always provides a much-needed dose of laughter. They give me strength. 

My momís a fearless fighter. I am a fearless caregiver. Donít mess with us.

 


 

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