PD AVENGERS MEMBER SPOTLIGHT
KRISTI LaMONICA
What advice would you give to someone who is newly diagnosed?
Slow down, take a deep breath, and stop trying to read everything on the internet. Instead, go to the Davis Phinney Foundation (DPF) website and either download (everywhere) or order a print copy of The Every Victory Counts manual (US or Canada only). It is so easy to fall down the rabbit hole of information overload which could result in anxiety and fear.
Find a support system. PMD Alliance has weekly Zoom support groups and DPF also has Healthy Parkinson’s communities where you can find local resources in the US. For other countries, please reach out to your local PD charity.
What do you wish you were told when you were diagnosed?
At first I was going to say I wish I was told that hormones and menstrual cycles impact either the efficacy of medication, exacerbate symptoms, etc; but I’m not going to say that because asking questions led me to this amazing community. Instead, I wish I was told how every day with YOPD will be different—you never know what each day will bring.
When were you/loved one first diagnosed?
Kristi with her two Border Collies.
My official diagnosis was in 2020, but the path to get there was far from linear.
Can you tell the story of your path to diagnosis?
My path to diagnosis was similar to a lot of other folks with Young Onset PD (YOPD). Like so many others, my story involves a limb, an ortho, and an almost surgery. I first noticed something was wrong in 2017 when I started having issues typing - my pinkie and ring finger on my left hand had a mind of their own and were not working in concert with my other fingers.
They were either slow, or twitchy, or would just push down a random key. It was an adventure typing on a projected screen in meetings. I figured it was carpal tunnel and just kept pushing through. I’m a biology professor at a small college in upstate NY in the US, and a student was showing a video as an introduction to his presentation and the subject had PD and a tremor. I looked down at my hand and it was doing the exact same thing.
I looked at my hand and thought “wow, I think I have PD”. I started to acquire some new, interesting movements when working out. When I’d put a barbell on my back for squats, the fingers on my left hand would start moving. When I would go to grab a heavy barbell for front squats, I’d have a vagal syncope episode where I’d almost pass out. Then my left elbow and left hip started to hurt. I finally made some doctor's appointments.
A hip MRI showed a number of issues that needed attention, so we followed that path which led to surgery and physical therapy. All the while, my elbow just continued to hurt. Healing from the surgery was difficult. My hip flexor was constantly tight and painful and my gait never recovered. Fast forward 6 months, my elbow still hurt and I figured I should take care of that, so back to the ortho I went.
After some X-rays, an EMG, and several discussions about surgery, resulted in my ortho saying I think you have Parkinson’s. That diagnosis had been bouncing around my brain for a few years, but hearing it said out loud was a shock. Lots of tears of frustration later, I was able to convince the movement disorder specialist to see me in two months instead of the seven they originally told me. Once I was finally able to see the specialist in the office, I was diagnosed within an hour.
Looking back, I had prodromal symptoms since 2005 where I’d act out my dreams. I was in graduate school and worked with stem cells and I’d take care of cells in my sleep. I was doing science in my sleep. It seemed funny and harmless at the time. I also have shoes going back to 2013, the left one is worn out on the inside where the little toe rubbed from clenching and cramping. In 2015, I started clenching my left hand all the time. I had so many symptoms along the way, but never connected the dots.
Why did you want to become a PD Avenger?
Kristi squatting with friends in her basement gym.
I became a PD Avenger because I need to be involved, I need to help make a difference, and I need to tell my story. We all need to tell our stories if we want to see advancements in future therapies.
What do you see is your superpower as a PD Avenger?
My ability to keep everything ordered, organized, and on track and my ability to follow through are my superpowers. As a biology professor with some neuroscience background, I can easily read the literature and am able to translate the science and make it accessible to everyone.
What is something you wish people knew about Parkinson’s Disease?
I wish people knew how unpredictable it can be. One minute you can be on with your meds working, and the next minute you can be off. It can be frustrating and can result in picking and choosing events to attend or not attend. It’s not that I don’t want to go to everything, it’s that I physically can’t.
What do you like to do for fun?
I like to hike with my best friend, her family, and my dogs. Garden and cook when I’m feeling good. Workout in my basement gym. Spending time with my family, especially my mom. Hanging out with my husband and watching old episodes of Top Gear and newer episodes of the Grand Tour.
