By: Shelby Bowling
My mother lost her fight with MSA on December 24, 2021. Although her journey was tough, the fight this woman had against this disease is truly inspiring. Her symptoms began a few years back. Nothing crazy at first: a few falls, first hospital visits, and her voice got quiet. December 2019 is when we finally got in to see a neurologist, and she was told she had Parkinson’s disease.
Now if you know my mother, this was devastating to her. For her entire life, she has been on the go. A runner, wife, mother, nana, and great grandmother. Slowing down wasn’t anything she intended on doing. At the beginning of that year, she won a 5k race! Who would have thought we would be where we are today?
After her Parkinson’s diagnosis and she started medication for tremors, I just knew something wasn’t right. I was queen of Google trying to find answers. Researching doctors and treatments. She was declining so quickly, and I felt so helpless. Finally, we found a new neurologist. He is the first person to explain MSA to us and how the diagnosis of this disease works. Falls quickly became an everyday thing along with hospital stays, physical therapy, and medication after medication. She was losing weight, but I saw that glimmer of hope she had that it would improve.
Once we were told she had MSA and that she was declining rapidly, she told me, “No more hospitals. No more doctors.” She chose to do hospice care at home, so our family decided to do all the things that made her happy. My sister and I cared for her 24/7. Sometimes she hated this; she never liked being dependent on anyone.
But all in all, I could see how truly happy she was. She was home with her son, daughters, and great grandchildren (probably her favorite part). We watched Clemson football games every Saturday. We went to the state fair, the zoo, and went Black Friday shopping. You name it and she wanted to be there!
As the disease came to an end, I really saw the devastation it could have on someone: the pain that could barely be controlled, the anxiety, the anger that her life was being cut short. We learned to adapt to make her feel loved. My daughter and nephew would crawl up in the hospital bed we had at home for her, and she would light up. I would sit and tell her all the things going on, play music for her, and just tell her how much we all loved her.
She eventually became confined to her bed. Breathing troubles arose. I knew something was wrong, and this was when hospice told me death was coming soon. I was devastated. My mom, the person that became my best friend, would be leaving soon.
That last week was full of family and friends letting her know how much they loved her. My sister and I did all the medications and just tried to keep her comfortable. I can’t count the number of times I crawled up in her hospital bed with her and fell asleep. We were all tired because we wanted every minute with her to last. Her last breath was gut wrenching, but shortly after, I realized that she was no longer in pain.
MSA has changed my life forever. Loving someone and caring for someone with this disease will change the way you look at things. The amount of doctors that were completely unfamiliar with this disease was terrifying. I truly believe if more people were aware of MSA my mother would have had a different outcome.
I hope sharing this story with you all encourages you to help spread awareness.
Because now her fight is my fight.
Shelby Bowling was the winner of The MSA Coalition’s MSA Awareness Month Essay Contest in 2022. The story she shares was an inspiration to our community members and helped spread awareness of this rare disease. The Coalition is here to support patients and family members like Shelby and her mother, and we continue to advocate for comprehensive research, better treatment, and faster diagnosis for MSA!