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Donít Mess With Us - Weíre Fighting MSA
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
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.