By Deborah Park
Hello, my name is Deborah and I’m a 25-year-old daughter whose mother lost her fight to Multiple System Atrophy on September 11, 2021. My story of caregiving began in 2018 when my mom was diagnosed with MSA-C. As a sophomore in college, I was completely lost and disoriented by the devastating news of a very rare disease. I remember feeling so confused because I had never heard of it.
Reflecting back on a few years prior to the diagnosis, my mom was gradually displaying unique symptoms, such as excessive random laughter, difficulty with balance/coordination. Upon beginning my research on MSA, I grew grateful for the early diagnosis because many patients don’t receive a set diagnosis for years, mistaking symptoms for Parkinson’s Disease. I began to slowly find resources like MSA Coalition and support groups with fellow caregivers online as I began to navigate this care journey. I grew a passion for advocacy, connection with other MSA patients/caregivers, and wanted to spread awareness.
During the last 2 years of college, I was a part-time caregiver for my mom, going home only on the weekends from school. This inconsistency intensified my guilt; however, I learned early on that caregiving for a loved one requires a TEAM. I was so thankful for my dad and brother who took the reins of the load in these years. I understand that sometimes you’re the only full-time caregiver for your loved one. Even then, a team is crucial to help your loved one. I have come to find later in my journey that there are so many resources and services available for you, so that you do not need to bear the burden alone. After completing my bachelor’s, I then decided to become my mom’s full-time caregiver along with my dad and brother. This was not an easy decision at all knowing that my life would be somewhat on pause, that I would experience the progression of MSA up close, and that some days of caring for my mom would be grueling.
Her condition was gradual for the first two years until it progressed very rapidly during the pandemic. By the end of 2020, she needed around the clock care for day-to-day activities that we often take for granted: bathing, feeding, toileting, shifting positions, and dressing. Her health declined so much more quickly than I had anticipated.
In the 1 year of intense full-time caregiving, I have deeply loved and been deeply loved by my mom. It was one of the hardest things to do as I watched her body deteriorate, but I would never replace that season for anything else. Caregiving is truly a loving sacrifice, where you grow to love someone with your all. I want to encourage the MSA Community to fight for your loved ones, care with compassion & patience, and never ever lose hope. Though caring for a loved one with MSA is one of the most physically, mentally, spiritually, emotionally taxing things, I would say yes again in a blink of an eye if it meant I could see my mom again.
The future may be uncertain but embrace each waking moment you have with your loved one. You are not alone. Your beautiful life will be forever remembered. I will continue to honor you in everything I do; I want to continue to raise awareness on MSA, share about your life, and long for the day I can see you again. I miss you so much & love you always, Mom.