Andrea Casson and Glen Milstein’s conversation is part of our series produced in partnership with StoryCorps to help change the narrative around neurodegenerative disease. 

Andrea and Glen discuss life with parkinson's

In this conversation, Andrea Casson and Glen Milstein talk about their life together, how they first met, and their happiest moments during the last 25 years of marriage.

They discuss the way Parkinson’s disease has “focused a finiteness” for them both, but especially for Andrea, in her work as a professor and scholar.

“Try to do everything you can do while you can. Try not to let the disease stop you. If you feel you can do it, you probably can,” she said.

Listen to the conversation

From the recording:

“I can tell you I’m definitely someone with Parkinson’s in the way that I wasn’t 10 years ago, where I could hide it more and it had less of an impact on my daily grace or lack thereof. The one thing the disease is doing that’s bumming me out is definitely making me feel less graceful and that was something that was important to me. … In many ways my life has stayed the same. I work the same place I always worked. I have more things happening than I ever thought I would: I have discovered art. I’ve managed to do the translations and textbook, which I probably would never have done because I didn’t feel like I had a window of motivation. I won the Chancellor’s Award for Teaching. I put together a portfolio.”

— Andrea Casson

“We choose to consciously live three lives at once and the biggest part of our life is how blessed we are. We have each other. We have work we love. We have children we love. We have a home we love. We’re OK. That’s the biggest constant in our life. The two Parkinson’s lanes are, one: We fight like hell to get the best care we can and we’ve been really fortunate in having really good neurologists with their own sense of humor and their own willingness to work with us and educate us, and put up with my unending questions. And point three is, it goes in one direction and we’re not pretending it doesn’t. We don’t shove it aside and we don’t live in the future that’s not here.”

— Glen Milstein

More about Sophia

Sophia Rodriguez

Sophia Rodriguez is a board certified genetic counselor specializing in Alzheimer’s disease research in the Latino population with a passion for healthcare advocacy for the underserved. Her work experience includes research and clinical trials for gene therapy for inherited retinal disease, as well as consulting and creating educational content for early-onset Alzheimer’s disease aimed to reach Hispanic communities. She is also committed to raising Alzheimer’s awareness and support for policy changes.

Sophia has a master’s degree from the Joan H. Marks Graduate Program in Human Genetics at Sarah Lawrence College. She grew up in Cliffside Park, New Jersey and loves anything related to cats, coffee, and food, and enjoys cooking, working out, and watching documentaries on just about anything.

Thanks to our friends at the Graduate Art Therapy Program at NYU Steinhardt School of Culture, Education and Human Development for introducing us to Andrea and Glen. The program has been conducting research in collaboration with the NYU Langone Medical Center to explore the positive impact of creative experience on the overall functions of people with Parkinson’s. disease. The free art therapy sessions have been offered for both people with Parkinson’s and multiple sclerosis for the past four years under the coordination and supervision of Dr. Ikuko Acosta, the Director of the Graduate Art Therapy Program at NYU.