Meet Greg Monroe! Greg is living well with Young Onset Parkinson’s Disease (YOPD) and receives care at the Duke Movement Disorders Center. Tell us a little about yourself. Feel free to share about your family, career, special interests, etc!
This interview is part of the May 2021 issue of Move More, the quarterly newsletter from the Duke Movement Disorders Clinic. Find that and previous issues, or sign up to receive future issues here.
I was born and raised in Durham, NC and went to Hillside High School. I am the younger brother of 2; my brother is 4.5 years older than me. I went to Norfolk State and then NCCU. I have one niece who I love to death and I have very close friends. I am a chef. My first job was in Burlington, NC at Perkins as a host and from there I went to the kitchen and have now been a chef for 25 years and I absolutely love it. I went to beautiful Sarasota, Florida in 2007, but returned to NC in 2016. I just turned 50 years old in 2020!
I love bowling, hiking, fishing and playing pool, but I can’t play as much now because of COVID-19. I also love singing and was in the choir from junior high school all the way through college.
Currently, my biggest issue is that I am on disability due to back issues (spinal stenosis), so I can’t stand up for long periods of times. This is complicated by my PD, but I am looking forward to working again soon.
Tell us about your Young Onset PD journey.
I was first diagnosed in 2009 while living in Florida. I started having tremors at work. At the time, I was working as a security guard overnight and one of my duties was managing noise complaints. One night, I had to ask someone to keep it down but my hand started trembling. That was the first time I noticed it. I’ve always been a ‘hands on’ guy, working on my car, putting things together, cooking, etc., so I thought that maybe I had just been nervous.
Then, in 2011 I broke my foot. The doctor noticed my tremor immediately and asked what was wrong. When I said “I don’t know” and told her that it had been happening for a while, she went off on me like she was my own mother! She encouraged me to get checked out, which I appreciated.
I saw a local neurologist and had a dopamine challenge – they gave me synthetic dopamine and then watched me for 4 hours for any changes. I didn’t actually really feel a difference, but the doctor said he could… and for the first time I was told I had Parkinson’s disease. I was 41 years old. To be honest, I didn’t really know what PD was other than that Muhammed Ali and Michael J. Fox also had it, but I felt some relief that it wasn’t something else “worse.” The hardest part of receiving the news was telling my mom, especially because she lived out of town. Other than my mom, I only told one friend. I didn’t want anyone to know until I felt more comfortable. My mom was so supportive and I found I really needed that family support.
About 1.5 years later, I was still living in Florida and I decided to get a 2nd opinion. That doctor suggested a DAT scan. He confirmed the PD diagnosis. I was 42 and I consider this my official clinical diagnosis. After more time went by, my symptoms started to get noticeably worse and I actually started to have a bit of depression. I really am a cheerful guy, maybe I wasn’t the class clown growing up, but I always laughed at them. I loved my jobs – I had two and it was a lot but I loved them! We usually had family days on Sundays and Mondays, but soon I was tired from my jobs and really was feeling the effects of PD, physically and mentally. In 2015 I went to the doctor and they asked me a question I’d never been asked before: “do you have depression?” I answered “yes.” I was prescribed dopamine for the first time at this point with the hope that it would help my movements, and thus, my mood, too. Soon, I could really feel the dopamine working.
In 2016, I decided to move back to NC. The Duke Movement Disorders team was recommended to me by my physician in Florida. Now Dr. Scott, Dr. Cooney and Kim Struble, the physician assistant, all work together to manage my YOPD.
It was at about this same time that I started boxing in Cary with the Rock Steady Boxing group. I definitely was one of the youngest guys there. Now, they are my family! They embraced me with open arms. That was really the first time I saw someone who was like me, that had what I had – tremors, balance issues. To see that many people together, at one time, I got a little tear in my eye. It made me feel at home.
You recently underwent Deep Brain Stimulation (DBS). Tell us about your decision to have the procedure and the experience.
At my first visit at Duke, the doctor asked if I had any interest in Deep Brain Stimulation (DBS). I was so scared about a brain operation, so I replied that I wasn’t. I continued taking dopamine, but it was clear as time went on that the side effects were getting really bad.
Three of the other guys in Rock Steady had already had DBS. I saw one of my friends bounce back like a new man! Shortly after we discussed DBS in our local support group. I decided to look into it. After lots of prayer, I decided to go for it! I had only had one surgery before, on my toe, so this seemed pretty extreme to me – especially when I found out I was going to be awake! I wasn’t scared, really, just anxious to get over it.
I had DBS on February 4, 2020. I am so thankful that I did it when I did, because it really was right before COVID-19 hit!
I have a video of myself the first moment my DBS was turned on. It’s so different than looking in a mirror - the camera made me realize “wow, this is what people see when they look at me.” Just to look it, it’s really an act of God. These doctors are phenomenal. I have one of the new stimulators with a remote control, I was the 2nd person to receive that. It’s been a journey, but it’s been going well ever since.
So if someone asked me about DBS... I would say: GET IT. Had I not been so scared when I first came, I would’ve gotten it 4 years ago. I know that I might even be better than I was today. I am 100% better than I was before. For young people going through this, it’s going to be a mind trip. You are going to see yourself in a light you haven’t seen before. It doesn’t hurt, it’s only made me better.
What advice would you give to someone who is newly diagnosed YOPD? What about someone who is considering DBS?
“Don’t be afraid. Stay in prayer. Continue to exercise, do what you can. Find a community, with people you can talk to… you can call me!”
What hopes and goals do you have as we start a new year?
This year I am planning to start my own food truck! Coming to a curbside near you this fall -“Neat, petite, good to eat!”