My PD Story
Amy Chrest
I am a wife, boy mom of two fantastic sons, a speech-language pathologist working in a large inpatient rehabilitation hospital, and a woman living with young-onset Parkinson's disease (YOPD).
I feel like I'm a bit of a unicorn at times, being a woman working in the medical setting with people who have neurological etiologies (some with PD) and having Parkinson's myself. Because of my professional career as a speech-language pathologist, I know what is coming my way with my own diagnosis of Parkinson's in terms of PD’s impact on speech, voice and swallowing.
I can't unknow what I know; however, I am not scared nor deterred to keep on living my best life!
I decided immediately upon receiving my diagnosis that I wanted to use my positivity, knowledge as a speech-language pathologist and personal experiences living with PD to help others. I immediately volunteered to enroll in a phase two clinical trial, which gave me a sense of some control over how I responded to my diagnosis and a sense of purpose.
Beyond sharing my diagnosis initially with my immediate family, a handful of friends and co-workers, I kept my diagnosis "secret" or hidden out of fear. I was too afraid to let people know, especially at my place of employment. I was afraid others would question my skills and abilities having a progressively degenerative neurological disease, especially diagnosed in my 40s.
However, as my symptoms progressed and became more visible, it was harder and more stressful for me to hide them. I would have to slow down, stop while walking due to painful dystonia, be cognizant that my arm was not swinging, and of course, recognize that the tremors in my fingers were progressing to my arm. I knew it was time to share my diagnosis publicly.
I went nearly seven years without disclosing my diagnosis publicly and had no idea there was a whole online community of others with YOPD, including WOMEN!
I work full-time and am a busy wife and mom… I had no time for social media and did not explore this way to connect with others until quite recently. After I publicly disclosed my diagnosis, I discovered this amazing online community of others living amazing lives with Parkinson’s, and felt like I'd found my people... I was not alone living with PD!
Sharing my diagnosis with others has lifted a tremendous weight from my mind and body, allowing me to find community and no longer try to hide my symptoms. I've been met with compassion and my goal is to extend that love and my experience and knowledge to others.
I recently began my journey as a Parkinson's Foundation Research Advocate with the and an Ambassador, volunteering within my community. I can't wait to see what the future holds as I continue to serve as a Research Advocate, Ambassador and online advocate to inspire, educate and hopefully be a source of positivity for others living with Parkinson's and their families/caregivers.
Explore our resources about young-onset Parkinson’s, Women & Parkinson’s, along with volunteer opportunities.
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