How I Am Helping Fight Parkinson’s Disease // Real people suffering from this illness are assisting genetic research as it narrows in on the disease’s underpinnings

Dr. Roy Alcalay is a neurologist who focuses on movement disorders, primarily Parkinson’s disease. He is the head of the Movement Disorders Division at the Sourasky Medical Center in Tel Aviv, Israel. Dr. Alcalay is also on the global research team of the Parkinson’s Progression Markers Initiative (PPMI), launched by the Michael J. Fox Foundation in 2010 to identify biomarkers of Parkinson’s and to help researchers set up clinical trials that will hopefully enable the development of better tools to diagnose, treat and prevent this disease.

At present, the PPMI team is looking for volunteers—with and without Parkinson’s—to participate in research on genetic mutations. Some mutations are more common in selective groups. For example, the LRRK2 and GBA gene mutations, which are linked to Parkinson’s disease, occur more frequently in Ashkenazi Jews than in the general population, so PPMI is interested in recruiting Ashkenazi Jews, among others. 

Reni Winter-Evans is a participant in this research. Here is her story.

I am 68 years old. My mother came from an Ashkenazic family that emigrated from Ukraine in the early 1900s. My father was Sephardic, a Marine who fought in Okinawa at the end of World War II. 

When I was six months old, my father was diagnosed with paranoid schizophrenia triggered by the trauma of his experience in combat. He was hospitalized, and my parents divorced. 

In the 1950s, many people who suffered from mental illness were hidden from sight and cut off from their families. I grew up with no memories of my father. As a teenager, I learned about genetic predisposition. I knew about my father’s schizophrenia and how horrific it was. My mother sent me to talk to a counselor because of my fear of inheriting it from him.

My stepfather was a Holocaust survivor. He loved to take our family on long rides into the countryside and tell us stories of growing up in Czechoslovakia before the Nazis destroyed his village, his family and his youth. Growing up in the home of a survivor made me different from the other Jewish kids in school. I felt his heaviness and suffered with him. I was determined to make things better. I became the happy child. No matter what was going on, my stepfather called me his ray of sunshine. This would impact the way I dealt with my own challenges as I grew older.

From the time I was a young girl, I dreamed of living on a small farm. After high school, I went to Israel and worked on a kibbutz, but I didn’t fulfill my parents’ wish that I stay there and marry a sabra.

More than 20 years ago, when I was in my 40s and working as a social worker, I began to search for my biological father. I tracked him down in the psychiatric ward of a VA hospital. I found out that my great-grandfather, David Ohana, had loved nature, spoke seven languages, and was a sofer and a skilled embroiderer who made covers for sifrei Torah out of silver and gold. I was astounded. I also loved nature, was unusually good at languages, and had also been driven to sew and quilt. Although I had always worried about inheriting schizophrenia, little did I know that I was at risk of inheriting other health woes as well. 

My biological father had a shuffle, gait issues and mild tremors, and his posture was stooped. All of the signs were there. I can see them clearly in hindsight. But he was severely mentally ill, so that was front and center. We never talked about Parkinson’s. I don’t know if he even knew he had it.

My stepfather passed away in 2004, and my mother passed away a year later. With the money they left me, I bought a 13-acre farm in Tippecanoe County, Indiana. The land was fertile, and the water from my well was full of minerals and nutrients. I named my farm Winter Haven and grew acres of prairie grass, native plants and wildflowers. 

I took a job as a germinator at the Dow AgroSciences seed laboratory to learn more about the process of germinating seeds. I was enthralled by the fact that something so tiny contained all of the genetic information necessary to bring about new life. My work involved testing genetically modified seeds to discover how long and under what conditions they would germinate. 

We wore lab coats and personal protective equipment because the area was treated with insecticides. I was given goggles and gloves to protect my eyes and hands, but I didn’t cover my face or protect my lungs. This turned out to be very significant later on, when I studied the confluence of genetics and environmental factors such as toxins in pesticides and air pollutants.

During the year and a half that I worked for Dow, I noticed that my foot kept catching on the floor as I walked down the long hallways to the lab. Somehow, I couldn’t lift my foot high enough to clear it. I thought, Why am I tripping on nothing? I didn’t know that it was the start of “foot drag.” I was also dropping things like crazy. When I was in motion, my brain and body didn’t coordinate, and I would walk into walls. I also fell a lot and broke a rib, my nose and a wrist.

I had other symptoms as well…a slight tremor, a metallic taste in my mouth, like smoke. I lost my sense of smell, had difficulty falling asleep and staying asleep, and I started to choke on food because I couldn’t coordinate my breathing and swallowing. I became irritable, intolerant and grumpy. I had no idea what was happening to me.

In 2012, I was working on a home healthcare team. One of my patients, who suffered from late-stage Parkinson’s disease, had become very agitated. I suggested lavender aromatherapy. The patient’s sister said, “That won’t help. She can’t smell anything. That’s part of her Parkinson’s.”

At that moment, something clicked in my head. I started to put the pieces together. My “foot drag” down the halls. My inability to smell. Could I have Parkinson’s disease? Working in hospice, I had seen patients with Parkinson’s who were terminal. There was hardly anything we could do for them. I was so frightened.

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