When Susan Brown of Atlanta, GA was first diagnosed with Young-Onset Parkinson’s disease (YOPD), she thought first of her 78-year-old father who lives with Parkinson’s. “I decided early on that I wouldn’t make assumptions about my path relative to my father’s progression, and I would find a community of people with Parkinson’s and caregivers to join,” she said.
Susan found that community in the Parkinson’s Foundation and hopes that her appearance in “Better Lives. Together.” the Parkinson’s Foundation public service announcement (PSA) will help others with PD find their community.
In the four years since her diagnosis, Susan is settling into the reality of living with a progressive neurodegenerative disease.
“When I was first diagnosed, I needed to find my Parkinson’s village,” said Susan. “The Foundation has provided a framework for me to focus on putting a face to Parkinson’s disease. It is a marathon that affects the whole family, and it is me.”
Helping the Parkinson’s community is meaningful to Susan. “Serving on Parkinson’s Foundation Georgia Advisory Board has given me a sense of purpose and a way for my family to rally around the hope that a cure is on the way,” she said.
For two years prior to her diagnosis, Susan’s doctors chased down symptoms that included a stiff hand, achy shoulder, tremor in her left foot and fatigue. “I strongly suspected I had Parkinson’s because I had developed symptoms that resembled those of my father, who had been diagnosed in his fifties also,” said Susan.
Susan vividly recalls the moment she was given her diagnosis. “It was Halloween in 2017 and I was alone when the call came in,” said Susan. “I distinctly remember standing there wondering how I was going to manage being a mother of two teenagers, a caregiver for my father, a wife, a friend, and a colleague at the Atlanta Speech School while dealing with Parkinson’s.”
Susan worried about how the news would impact her family. She said, “How would I tell my parents who would worry about me constantly as soon as I told them? I didn’t want to sign up my husband for a future that would look very different than what we envisioned.”
Modifying her lifestyle has helped Susan cope, but she is honest about how challenging her new normal can be.
“I take 20 pills a day. I exercise (and I’m not an exerciser), and I battle brutal insomnia,” said Susan. “Most days, my Parkinson’s is at the top of my mind. There are very few moments when I forget I have it, but I have an excellent team of doctors, trainers, family, and friends that helps me through it all.”
Susan is proud to celebrate her supportive community each year at Moving Day Atlanta. In 2021, she was Atlanta’s top individual fundraiser. Her team members included friends and family from around the world. A key to her success is asking each of her contacts to share her team page with nine people since every nine minutes, someone is diagnosed with Parkinson’s in the U.S.
“Moving Day is an opportunity to celebrate our friends and family who walk with us on the Parkinson’s journey,” said Susan. “Our team, the Atlanta Movers and Shakers (pun intended), just finished participating in our fourth walk, and I’m proud to share that we raised more than $28,000 this year for the Foundation,” said Susan.
Susan approaches life, no matter how challenging, with optimism. She said, “Not long after being diagnosed, I attended a birthday party where I spent joyful hours dancing with friends. A friend recently reminded me to keep dancing, and I plan to!”