My father was diagnosed with Parkinson’s disease in 2002. He was 50 years old. It was late on a school night and my mother called my older sister and me into our parents’ bedroom. My younger sister—only six years old at the time—was not invited in.
There was no beating around the bush. My mother was very direct as she rehashed the details of our father’s diagnosis. Meanwhile, he sat up straight on the opposite side of the bed in complete silence.
This was not the first time Parkinson’s had struck our family. Our Safta Sara, our father’s mother, had been diagnosed with the disease ten years prior.
A degenerative disease with no cure or definitive known cause, Parkinson’s disease (PD) affects the brain’s production of dopamine—a neurotransmitter vital to the regulation of body movement. Modern treatments are offered to help manage the early motor symptoms of PD; however, as the disease progresses, such treatments become ineffective and PD patients lose their ability to move, talk, and even control their emotions.
Happy memories of my Safta Sara are few and far between. Therefore, I’ve held onto a very distant memory of a day we spent together at the pool. Singing a happy tune and navigating through the water as I sat atop an orange floatie, she offered the comfort that only a grandmother could provide. In her eyes, I could do no wrong.
Years later, when I asked my mother about that day, she looked at me with a shocked expression.
“How do you remember that? You were only about six months old!”
The memory of the day at the pool came rushing back to me as I sat motionless on the floor of my parents’ bedroom.
“Your father is in the early stages right now. I know you are probably thinking of your Safta, and how sick she is, but your father has many years ahead of him that will not be heavily affected. We are staying strong and positive and we don’t want you to worry. If you have questions, please ask us, but don’t be scared or sad for your father. He does not want that. That is the last thing he wants.”
My father is the most stubborn person I know. Born and raised in Israel, he immigrated to the United States in the late 70s. Years later, after my sister and I were born, he went to the Consulate General of Israel to get a new passport. Upon his arrival, he was told that Israeli passports needed to be made for his daughters, as well. He was confused by this.
“But my daughters are American. They were born here.”
The consul informed him that if he chose to keep dual citizenship his daughters would also be Israeli citizens. Subsequently, and quite dramatically, he tossed his passport in the consul’s face.
“You will not tell me what my children will and will not be!”
It was with that same stubborn nature that he approached his diagnosis. My father did not see himself as a victim and he would not let anyone else see him as one, either. However, unlike in his youth, misguided pride would not cause him to act irrationally. My father would use his strength as a means to remain positive and challenge his predicament. My father would take advantage of this beautiful life, and give it all he has. And for years, my father defied the countless odds stacked against him.
Since about forever ago, my parents, sisters, and I have taken family vacations every summer. Usually outdoorsy adventures replete with strenuous hikes and scenic drives, such trips became more extravagant after my father’s diagnosis. From Alaska to the Canadian Rockies, to Yellowstone National Park, and all the way to Thailand, my father continued to lead our caravan of five, as tourists around us looked on with disbelief.
“Your father is an inspirational man,” one kind stranger once told me.
It was not until 2015 when I realized how much worse my father’s condition had truly gotten. After a tumultuous year in NYC, I decided to move back home with my parents and conquer a health-related issue of my own. With my mother working a full-time job and little sister recently off to college, I was able to spend more one-on-one time with my father than I had in a long time. However, it soon became apparent that my father was not who he once was, and it was heartbreaking.
In addition to physical handicaps, which now made themselves very obvious, my father exhibited various non-motor symptoms of Parkinson’s. Namely, he was easily angered and agitated. Menial frustrations were blown way out of proportion and minor disagreements turned to screaming matches. I witnessed arguments between him and my mother escalate to alarming heights because there was just no reasoning with him. Just a few months ago, he was diagnosed with Parkinson’s disease dementia.
My family and I decided to spend last New Year’s Eve together. On that night, my father was his old, happy self. Doing his best to keep the rhythm, and using his cane to feed the beat, he danced the night away with his three daughters and wife. But as happy as I was to be there with my family and see a smile on my father’s face, I also felt great sorrow. For such moments are now fleeting, and there is just no telling how much longer we have to enjoy his smile, his humor, and his kindness.
My father isn’t the only one with such a story. About one million people in the U.S. are living with Parkinson’s disease, and they need your help.
On Saturday, April 22, my father, sisters, and I will be walking in Central Park as part of the Parkinson’s Unity Walk. The largest grassroots Parkinson’s event in the U.S, the walk raised over $1,400,000 last year—all of which was donated to Parkinson’s research.
We would be honored if you could join us. However, if you can’t make it, you can still help. Please share this story on your Facebook or send it to a friend who might be struggling with a similar thing. But above all, please cherish those you love, make every last moment with them count, and never ever stop trying to conquer the unbeatable odds.