This month, Kristi LaMonica will be our Parkinson's Spotlight! If you don't know her, you are missing out. I can personally attest that Kristi is the coolest and most service driven person there is. Kristi is a Biology Professor at Russell Sage. She is also the co-chair of the wellness committee for PD Avengers, she is an Ambassador for the Davis Phinney Foundation, and she is involved in several local and global efforts to raise awareness and impact laws around Parkinson's.

Kristi's journey to diagnosis started in 2019, but it should have started much sooner. Back in 2005, Kristi was experiencing REM sleep disorder where she would do work on her stem cells in her sleep. "Everyone thought it was charming but it was really my first symptom," Kristi said. In 2019, Kristi saw an Orthopedic Doctor for elbow pain, after recently having a hip labrum repair following an injury during CrossFit. The labrum repair changed her walking pattern even to this day. Kristi recalled her experience with her hip and shared that "ortho would get mad because I couldn't relax my hip muscle." Her Orthopedic ran a bunch of tests and could not find something that was the cause of her elbow pain. This eventually led to her YOPD diagnosis at the age of 40.

YOPD brings unique challenges, like managing her career and her diagnosis. "It is tiring to teach two classes in one day but I have to because collecting disability is incredibly difficult to collect when you are young" Kristi says. Kristi shared that sometimes she will walk totally normal and will have feelings of "imposter syndrome" when she is using her handicap hang tag "but in 20 minutes I might not be able to walk at all." Her experience with medical professionals have added to her challenges when people tell her "you are too young to have PD" or when she does not receive the same help compared to older adults with more physical disabilities. "I constantly have to educate people."

Kristi uses her diagnosis to help train the next generation of Physical Therapists and Occupational Therapists. She wants to "show them the kind of doctor I want to see." Kristi uses her fluctuation in motor symptoms, the influence of menstruation on PD, and medication effectiveness as a teaching moment for all of her students.

Advocacy is extremely important to Kristi. When you search YOPD on research databases, only 71% of papers that come up as a result even mention YOPD. 4% of papers involving Parkinson's discuss menstruation, and 9% discuss pregnancy. Kristi is in different Parkinson's Facebook groups and shared with me that every week someone was asking about menstruation. She would comment on peoples posts which led her to be invited into other PD related groups involved in advocacy and research. This ultimately resulted in her involvement with writing "In Her Shoes", a short book written for women with YOPD. Kristi was involved in writing a survey about the experience of women with Parkinson’s. This survey was then implemented through Fox Insight, an online clinical study where people with Parkinson's disease and their loved ones share information to enhance research towards treatments. The Fox foundation recently contacted Kristi and invited her to a zoom call with staffers of our senators about the national plan to end Parkinson’s. She was also asked to be involved in PD registries where she spoke at a press conference at the state capital for the Fox Foundation.

Kristi helped write a global support group guide to help low income countries with awareness and education. Kristi specifically talked about the culture around Parkinson's in Africa and said “they will think someone with PD Is a witch. They are ostracized.” Kristi is working with my co-chair of wellness of the PD Avengers from the UK on a project called transforming Parkinson’s care across Africa with representatives from Ghana, Kenya, Ethiopia, South Africa, and Nigeria so all resources developed are both culturally competent and relevant.

Kristi works hard to stay active and exercise as much as she can. She has recently rejoined CrossFit but does have a home gym if her medications are not working well enough to go to the gym. When talking about CrossFit Kristi shared “it is what you make of it, if something is too hard I just modify it. Most people are not doing full pull ups or push ups, you just do what you can. As long as you try, all that matters."

Kristi's advice to all our readers:

Find your community. It is really important to find support and find other people with PD. There is something to be said about being with other people that have PD. They understand what you are going through.