Amy Chrest, SLP, with YOPD: Speech-Language Pathologist Living with Parkinson’s

An interview with Amy Chrest, SLP, with YOPD: Speech-Language Pathologist Living with Parkinson’s on 6/10/2024.


I am a wife, mother of 2 fantastic sons, and a medical Speech-Language Pathologist.  I was diagnosed with Young Onset Parkinson’s Disease in my 40s.  I work as a Speech-Language Pathologist in an inpatient rehabilitation hospital with people experiencing neurological-based etiologies.  I am passionate about helping others, breaking the stigma of mental health and mental illness, and being an advocate for Parkinson’s research and awareness.


Please tell me a little about your background. 

I’ve been a Speech-Language Pathologist for over 30 years.  I got my Bachelor’s degree in Communication Disorders from Old Dominion University, my Master’s degree in Speech-Language Pathology from the University of North Carolina at Greensboro, completed my Clinical Fellowship Year at Bay Medical Center in Panama City, FL and am working at a large inpatient rehabilitation hospital in Raleigh, NC with people with neurologically-based conditions.  I was diagnosed with Young Onset Parkinson’s Disease 7 years ago.  I feel I’m a bit of a unicorn being a woman, diagnosed with Young Onset Parkinson’s Disease in my 40s, AND being a Speech-Language Pathologist in an inpatient rehabilitation hospital so I work with people who have Parkinson’s.  I am a person living with Young Onset Parkinson’s Disease.  I waited almost 7 years before I publicly disclosed my YOPD diagnosis, for fear of others thinking perhaps my skills and abilities would be diminished.  When I did finally decide to disclose my diagnosis, I was met with such loving support and found an online community of others living with YOPD, which has helped me tremendously!  I’ve learned so much from those with YOPD online as well as caregivers like you, George!


What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure? 

My passion is helping others, working to break the stigma of mental illness, advocating for Parkinson’s research, educating others about Parkinson’s (yes, Parkinson’s can look like me!), and supporting others in our community living with YOPD.  I got involved with PD awareness and advocacy the day I was diagnosed with YOPD.  I wanted to make a difference and use this diagnosis to help others.  I immediately became involved in a clinical trial as a participant.  Once I decided to disclose my YOPD diagnosis beyond my immediate family and a few close friends nearly 7 years into my diagnosis, my passion and mission became helping others with YOPD by spreading positivity, candor so others don’t feel so alone with their experiences, and education via my knowledge as a Speech-Language Pathologist coupled with my personal experiences with regards to what has helped me during my PD journey to manage both motor and non-motor symptoms …. Such as EXERCISE!


What type of goals do individuals with Parkinson’s have when working with you?

I am the person living with Parkinson’s.  I also happen to be a Speech-Language Pathologist working in an inpatient rehabilitation hospital, so I occasionally work with people with Parkinson’s.  When I work with people with Parkinson’s, it is when they are in the hospital, typically unrelated to their PD diagnosis, so their goals are typically to recover from their admitting diagnosis and get stronger to go home.


What events do you participate in?

I recently completed my onboarding as a Research Advocate with the Parkinson’s Foundation at the national/international level.  I am also an Ambassador for the Parkinson’s Foundation, volunteering within my community.  I am beginning my journey as a Research Advocate for the PF and will serve on a Patient Advisory Board working with researchers whose focus is on the care of people with Parkinson’s and their caregivers as well.  I recently served as an ambassador at a day-long seminar hosted by the Parkinson’s Foundation, “Managing Changing Symptoms” and managed the PF table, providing education to attendants about resources for Parkinson’s.


How does this also assist the caregivers? 

Caregivers are an invaluable and integral part of the complex puzzle of Parkinson’s.  When a loved one has Parkinson’s, the whole family is impacted.  Advances in research, education about PD, and advocacy should support caregivers as well.  The Parkinson’s Foundation has resources for caregivers and includes caregivers in research, advocacy, and education.


How can someone get in touch?  What is your website? 

I do have a social media account on Instagram, creating content to inspire and educate others both with and without Parkinson’s, which is @medslpwithyopd (this stands for medical Speech-Language Pathologist with Young Onset Parkinson’s Disease).


How can others also become advocates for awareness?

Social media has been a fantastic connector for me and was the way I found my YOPD community.  You can also reach out to organizations such as the Parkinson’s Foundation, Michael J Fox Foundation for Parkinson’s, Davis Phinney Foundation, the Brian Grant Foundation, to name a few.  There are many, many more that focus on Parkinson’s research, education, and advocacy.


When did you disclose your diagnosis and with whom?  Did you have any challenges with deciding when/how/who to share your diagnosis?

I waited nearly 7 years to disclose my diagnosis of YOPD publicly (beyond a select few friends, co-workers, and family) out of fear.  I was frightened people may think my skills and abilities would be diminished plus I didn’t want to burden anyone with such heavy information.  That caused me a tremendous amount of stress and unneeded weight to carry around.


In your opinion what is the key to effective advocacy? 

Connecting with others on a human level, transparency, putting yourself out there and being visible.


What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?

Exercise has been my key activity, which I’ve done ALL of my life….it’s like breathing to me.  Exercise helped keep my symptoms more on the mild range for 5 years before I needed to start medication as symptoms progressed.  Exercise is essential for my mental well-being as well.  My workdays are long, and I work with people in the hospital with complicated and challenging communication and swallowing needs as a Speech-Language Pathologist, listening and talking to others all day long.  So, when I get home, I have to have some quiet alone time to decompress.  I maintain my appointments with my neurologist/motor movement disorder specialist, take my meds as indicated/prescribed but I also am the one in charge of me, so if I notice my meds are not working as I believe they should be or if I’m experiencing unwanted side effects, I initiate independent review of the literature and contact my neurologist/motor movement disorder specialist and advocate for myself.


Why should people who don’t have Parkinson’s care about this? 

Parkinson’s is the fastest growing neurological condition today and many, many more people will be impacted.  People are living longer, which means many people will eventually know someone with Parkinson’s.  On a human level, it’s a devasting disease that is only “managed” but not cured.  We can do better.


Have you had any family members or relatives affected by Parkinson’s disease? 

I have YOPD, so there’s me.  My grandmother also had Parkinson’s Disease.


If you had one song that would tell us more about you or represent your life which song would it be? 

“Kite” by U2 ; it’s reflective, it’s supportive, it’s emotional, its lyrics contain elements of wind and ocean and water, it can be a parent speaking to their child, a child speaking to their parent, it’s about life and simply beautiful.


If you had one final statement or quote you could leave for the Parkinson’s community, what would it be? 


“When you decide to disclose or share your diagnosis with others is a very personal decision for you.  There is no right or wrong way or timeframe…but when you do decide to share your diagnosis with others, you will feel the weight of the world lift off your shoulders, you can embrace a community of others with Parkinson’s, and no you are not alone.” Amy Chrest