Kristi LaMonica: Bridging Science and Advocacy for Parkinson's

The first whispers of Parkinson's crept into Kristi's life in her early 40s, shortly before her 41st birthday. It started in 2018 with persistent pain in her left hip and elbow, prompting visits to her general practitioner (GP) and later an orthopaedic doctor. When Kristi had hip surgery in 2019, she was solely concerned with the recovery process, dismissing other symptoms like a persistent twitch in her pinkie and ring finger, a slower left side, and a lack of a swing in her left arm.

The true gravity of her condition hit in March 2020, amidst the burgeoning COVID-19 pandemic. Kristi returned to her orthopaedic doctor, who instructed her to do "a bunch of things" in office, before saying the unexpected words: "I think you have Parkinson's." Those words from a medical professional transformed her perceived symptoms from explainable anomalies to a concrete diagnosis, marking the beginning of her journey with PD.

“I actually had motor symptoms for 7 years prior to my diagnosis in 2020, but they could always be explained by stress or something else going on in my life.? It was one thing when I said it, but it became more real when a medical professional said it”, Kristi states.

After being advised to book an appointment with a specific movement disorders specialist, Kristi admits she was "frustrated and began to cry" when the receptionist informed her that the next available date for an appointment was more than seven months away. Contrary to her fears, they called her back for "an appointment in a little over a month".

"It was pretty obvious that I had Parkinson's a few minutes into the appointment [with the movement disorders specialist]," she added, noting that she fared "poorly on every single test" before receiving the formal diagnosis. After this moment, it felt like the world around her blurred into the background as she grappled with the reality of her condition. Numbness settled in for a week, but Kristi's resilient spirit refused to be subdued.

For the first six months post-diagnosis, Kristi kept the news within her immediate family circle. However, she soon realized the power of advocacy. In a moment of profound decision, she chose to share her story through a The Michael J. Fox Foundation for Parkinson's Research Team Fox fundraiser. No longer content with silence, she embraced her role as an advocate, which was easy by being a scientist on a mission to raise awareness and drive change.

A Shift in Lifestyle

The diagnosis brought about profound changes in Kristi's life. She experimented with various diets to enhance the effectiveness of her medications, even trying veganism for a period. As a former #CrossFit enthusiast, Kristi found herself recalibrating her physical activities, humbled by the changes Parkinson's brought to her strength and abilities.

Despite the challenges, Kristi persisted. She continues to work full-time as a college professor and chair of the Department of Biology and Health Sciences at the Russell Sage College, in New York, utilizing her background in Cell and Developmental Biology and Neuroscience to delve into Parkinson's #research. Driven by a desire to make a difference, Kristi shifted her research focus to women, menstruation, and young onset Parkinson's, an often overlooked area in the field.

Advocacy and Empowerment

Kristi's advocacy extended beyond her personal journey. She co-authored "In Her Shoes," a book by and for YOPD women, offering a beacon of understanding and solidarity. Additionally, her involvement in the PD Avengers women's group led to groundbreaking surveys that replaced anecdotal evidence with tangible data. Through her work, Kristi aimed to shift the narrative of Parkinson's away from the stereotype of the elderly, white man, highlighting that PD knows no boundaries of age, gender, or race.

She also co-led the development of wellness resources with the PD Avengers, focusing on global support and addressing stigma. Kristi's efforts were not just about her own fight against PD but about empowering others to face their challenges head-on and continue pursuing their dreams.

Challenges and Hope

Living with Parkinson's poses daily challenges for Kristi. Unpredictable "OFF” times plagued her, rendering her slow, rigid, and often unable to function. Yet, amidst these struggles, Kristi remains hopeful. Scheduled for Deep Brain Stimulation (#DBS) surgery in May (2024), she looks toward the future with optimism, believing it could help her control motor symptoms and improve her quality of life.

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