An interview with Megan Lee: Running Towards a Cure in Honor of Don Gerth on July 15, 2024.
Please tell me about yourself.
I’m Megan, a mom, wife, daughter of a Parkinson’s warrior, and member of Team Fox since 2017. I’ve had unwavering support from my family throughout my life and was given the opportunity to do the same for them through Team Fox. That opportunity came through my dad’s Parkinson’s disease, but it had more of a positive impact on our lives than any of us could’ve imagined. It gave me an extra purpose I didn’t even know I needed and gave my family the outlet and resources we needed to process every stage of my dad’s Parkinson’s disease.
Tell me about your loved one who passed.
My dad was a Navy veteran, a retired Lieutenant with the local Sheriff’s office, a husband and father. He loved fishing, making others laugh, music, flying helicopters, and helping others in any way he could. He loved doing silly dances, telling jokes, and overall, just trying to embarrass me but ended up just making us all laugh instead.
What was it like to be a caregiver
I was a second level caregiver. What I mean by that is my mom was the main caregiver for my dad, but I would assist her in any way I could. It was a difficult position to be in especially as a child of a Parkinson’s warrior. I wasn’t physically around daily, and when I would be there physically, I saw the progression of the disease magnified. I remember trying to advocate for both my mom in her role as the primary care giver, and advocate for my dad as a Parkinson’s warrior. I would encourage, sometimes gently and other times not as gently, for them to be as honest as possible with the doctors since they can only help with what they are told. My dad didn’t always like to say everything he was experiencing with PD>.
What family member had Parkinson’s?
My dad had Parkinson’s.
Can you tell me more about the individual? Background, history?
My dad was born and raised in Florida. He served during the Vietnam war and left the Navy; he joined law enforcement. He was part of the trauma hawk team in South Florida through the Sheriff’s office which combined his love of flying with his love of helping people. He got moved around to different stations within the Sheriff’s office while earning promotions. He finally retired as a Lieutenant on road patrol in 2009.
What do you miss most about the person?
The thing I miss the most about my dad is watching the joy and love light up his face when he did something he loved. Whether it be catching a fish, playing music, watching his grandkids grow, or participating in all the special occasions. He didn’t get a chance to meet his youngest grandchild before passing and his presence is missed with each passing milestone. And as much as I hate to admit it, I miss his cheesy jokes and him hiding around corners trying to scare us.
What was it like for you to be a caregiver?
It was difficult seeing the progression with every visit. It was also difficult not being able to do much besides emotional and mental support for my mom, who was the main caregiver. Frustration is a big word that comes to mind too. Not just for me, but for my parents as well.
How did Parkinson’s impact your family and your life?
At first, we didn’t really know how much it would impact our family or our lives. We only thought of the negatives because that’s all we knew or could find through research at the time. I struggled with it greatly as I was starting a huge new chapter in my life when I was first told of my dad’s diagnosis. We also were somewhat blissfully unaware of how fast things could change with Parkinson’s. My dad was lucky that he didn’t really need much medical intervention in the way of medicine for quite a few years after diagnosis. Looking back though, I realized that we needed more information on the disease and how to go about managing it. Once he started progressing, it was a very quick downward slope.
Once we found the Michael J. Fox Foundation, we had a whole team of people; through Team Fox, we found a home. Just walking into the first event I was part of, I felt this sense of calm and warmth, and was welcomed by everyone. I’m still in contact with just about all of them to this day. They all had a greater understanding of what I was experiencing as well as what my dad was. There was an instant bond unlike anything I’ve experienced before. I just remember leaving that night and looking at my mom. We both had the same look on our faces, of shock and disbelief of how positive everyone was while dealing with an incurable disease. We realized then that we had approached everything with my dad’s diagnosis with the wrong mindset and we needed to change. Once we had done that and were armed with better information, we were able to advocate for better care for my dad, which in turn helped with his quality of life.
When were they diagnosed?
2009
What year did your loved one pass?
2021
What are your fondest memories together?
Every Friday after he would pick me up from school, we would go to the Italian Ice shop on the way home and just talk. I can’t remember what we would talk about, but I know when we didn’t like the flavors that would be a topic.
What memory do you want the world to remember forever?
The memory that I want to be remembered forever is the fact that no matter how hard things got for my dad, he faced them with humor and strength. He never gave up even when his Parkinson’s was fighting him on his off days.
What is one area that you wish had more knowledge or awareness about Parkinson’s?
The one area I believe that needs more awareness is the timeliness of medications given. When Parkinson’s warriors are in the hospital or any assisted care places, the nurses and staff try their best to get the medicine on time, but from personal experience, they didn’t fully understand the reason why the medications had to be given at the same time everyday no matter what. As those close to the disease know, timely medication keeps dopamine levels “normal” so Parkinson’s warriors can focus on healing instead of if they are in their “off” periods.