An interview in memory of Pierce J. Butler by Julia Wall from the Michigan Parkinson Foundation on August 8, 2024.
Please tell me about yourself.
I have 5 siblings and we were raised in a loving, Irish, Catholic family. My mom, Ruth Butler was an original member of the Michigan Parkinson Foundation.
Tell me about your loved one who passed.
My dad was diagnosed with PD at the age of 36 years old. That was the same year I was born.
What was it like to be a caregiver.
Parkinsons has been my normal my entire life. My dad was a stay-at-home dad and my mom, a registered nurse worked full time and even had a paper route to help subsidize our catholic school education.
My mom was an incredible advocate for the people with Parkinsons. She was a support group leader for 30 years, testified at congressional hearings for more funding towards Parkinson’s disease and spent countless hours teaching the healthcare community about the disease. She set the stage for all of us to be caregivers. This was again my normal. At an early age, I remember having to help him get out of a chair or bed. He moved slowly, so we moved slowly.
What family member had Parkinson’s?
My dad passed away on September 5, 2001. His funeral was on September 11, 2001.
Can you tell me more about the individual? Background, history?
I was lucky to have a wonderful family, Parkinsons is not an individual disease, it is a family disease. My family rallied to care for my Dad and Mom. My Dad was diagnosed with prostate cancer after nearly 45 years with PD. He chose not to treat it, he wanted to go out on his terms. His body was tired.
What do you miss most about the person?
Although my dad was never the soccer coach, we didn’t play ball in the backyard, I was very lucky because I had meaningful conversations with my dad. He taught me the important lessons of life. My fondest memories took place in our family room, him in his Lazy Boy and my usually sitting on the floor at the foot of his chair, talking. I was very blessed.
How did Parkinson’s impact your family and your life?
Although I didn’t plan it, my entire career has been focused around caring for people with Parkinson’s disease. I worked in the Parkinson’s Disease and Movement Disorders Center at Henry Ford Health as the DBS Program Coordinator (Deep Brain Stimulation) for 24 years under the direction of Peter A. LeWitt, MD. In 2022 I accepted the position of Director of Education at the Michigan Parkinson Foundation. I believe that you do best with what you know, and I certainly know PD on a both a professional and deeply personal level.
When were they diagnosed?
1965
What year did your loved one pass?
2001
What are your fondest memories together?
Chatting! Watching movies or TV shows together, especially game shows.
What else would you like to share about your loved one?
He was an amazing example of a father and husband. I once asked him if he as mad at God because he had PD. His response was, “I am the luckiest guy in the world, I have a wonderful wife and 6 healthy children, that is all a man could ever ask for.”
What memory do you want the world to remember forever?
I knew at an early age I wanted to enter the healthcare field. After college I started a 24-year career at Henry Ford Health where I worked in the Parkinson’s Disease and Movement Disorders Center as the DBS Program Coordinator. In 2022 I was offered the position of Director of Education at the Michigan Parkinson Foundation. I now feel as though I have a greater impact across the state to our 35,000 constituents living with PD. The best is yet to come but, in the meantime, I am honored to carry the torch for my Dad and Mom.