week 15: this week i'm gonna... help cure Parkinson's Disease
Emilia Alexandrova was born in 1936 in Kiev, Ukraine, where she lived and worked until 1992, when she immigrated to the US with her husband and two children. Emilia's life was never easy - she worked hard to provide for her family in Communist Russia, and she left everything to move to the US in order to offer her children a better education and a life free from discrimination and full of opportunities.
She lived through the loss of a young child, the Chernobyl fallout, and the fall of the Soviet Union. She was strong, she was smart, and she was kind.
In 1994 when Emilia was 57 years old, she started noticing erratic movement in the pinky finger of her hand. Shortly thereafter, she was diagnosed with Parkinson's Disease and began the fight that she would endure for 20 years.
In the early stages of her disease, Emilia maintained a normal life - actively involved with her adult childrens' lives, but living independently (her husband, Yakov, passed away in 2000). She moved to Brooklyn in 2001 and enjoyed being surrounded by the sounds of Russian language on the streets and seeing familiar food (caviar!) in the markets. Upon moving to New York, Emilia began receiving treatment with Dr. Alessandro Di Rocco, the Executive Director of The Fresco Institute for Parkinson's and Movement Disorders at NYU Langone Medical Center.
It was immediately apparent to Emilia's family that Dr. Di Rocco provided an unusually thoughtful level of care. Dr. Di Rocco patiently adjusted medications, listened to every question, concern, and (sometimes ridiculous!) Russian superstition, and even became actively involved with securing and maintaining competent home care for Emilia when the time came. According to Emilia's children, they were constantly dealing with new and unexpected challenges related to her deteriorating health, home care situation, and rigorous medication schedule. Dr. Di Rocco and his amazing staff treated Emilia like she was his only patient.
The mission of The Marlene and Paolo Fresco Institute for Parkinson’s and Movement Disorders at NYU Langone is to advance treatment, education, and research for Parkinson's disease and movement disorders. They take a humanistic, empathetic, and compassionate approach to care, which emphasizes the person, rather than the disease.
The Fresco Institute is also committed to research to improve understanding of the nature of Parkinson’s disease and related movement disorders. Researchers are actively investigating ways to better address symptoms and improve treatment options. Among these innovative treatments are experimental medications tested in clinical trials, new forms of deep brain stimulation, and groundbreaking noninvasive treatments, such as transcranial magnetic stimulation.
The Fresco Institute is proud to be a National Parkinson Foundation Center of Excellence since 2009 and to be a leader in Parkinson’s care.
When Emilia passed in January 2014, her family requested donations be made to The Fresco Institute in lieu of flowers. Her family is eternally grateful for the care she received there, and hopeful that the research conducted by Dr. Di Rocco and his staff will contribute to a cure for Parkinson's Disease.
“Treatment for Parkinson’s is not one size fits all,” Dr. Di Rocco explains. “We must continually evaluate and personalize the treatment plan based on the patient’s evolving symptoms and quality of life. Through fellowships and clinical and scientific collaborations, we will develop better treatments and understanding of the disease.”
Notes for this week:
- April is Parkinson's Awareness Month and April 11th is World Parkinson's Day
- In case you didn't recognize the names Isanna, Alex, and Jack - Emilia Alexandrova happens to be the givetwig Founder's mother-in-law!
- Our collective givetwig donation will sponsor important Parkinson's research.
- For further information regarding The Fresco Institute, please check out their website.
this week i'm gonna donate to The Fresco Institute for Parkinson's and Movement Disorders.