Jodeane Pringle: Americans for Cures Parkinson’s Disease Ambassador
Jodeane Pringle, PhD is a clinical geneticist at a major medical center in the San Francisco Bay Area. She is a Diplomate of the American Board of Medical Genetics and Genomics (ABMGG), with a specialty in Clinical Cytogenetics.
Finding out I have Parkinson’s Disease changed how I think about everything and everyone in my life. “Incurable”, “neurodegenerative”, “progressive”: there is literally nothing that looks quite the same as it did before a doctor spoke those words to me, about me! The first few years are difficult in ways that only other PWP’s (Persons With Parkinson’s) can fully appreciate. That’s why I found a support group right away — for young onset people since I was only 46 years old — and came back month after month. There were so many decisions to make as I restructured my life around the daily reality of the illness. The advice I got at the support group helped me make decisions I am very happy with: for instance, to educate myself thoroughly about the illness, to find the best-qualified doctor I could, to find treatments that worked for me amongst a baffling array of options, to continue working when my employer started pushing me to retire early — it’s a long list. Most importantly, I realized the power of networking with other people with Parkinson’s — no one needs to take this journey alone.
I would especially encourage others like me with young onset Parkinson’s to educate yourself and explore the options you have to continue participating in all the activities in your life, modified as necessary. In my case, the tremor I experience caused a degree of disability at my job that my employer could not accept. The employer-sponsored disability insurance (that I never dreamed I would need!) provides for an early retirement in many scenarios like mine. But I just could not accept the idea of retiring at my age — I felt like I was being tossed out on the scrap heap, my depth of experience and expertise in the field disregarded, with no effort to find accommodations that would allow me to continue working. To make a two and a half-year long story short, I found a lawyer with expertise in employment law, consulted my labor union, and educated myself about the Americans with Disabilities Act. I learned so much I did not know about the law — and that my employer did not know either! Through my network of PWP’s I connected with two government agencies that consult for free with disabled persons to negotiate reasonable accommodations with employers, and even loan them assistive equipment to try out. The happy end to this story is I am back at a restructured version of my job that my employer has accepted permanently. I am also experiencing very slow progression of the illness, so I may well be enjoying my work for years to come!