How Parkinson’s disease has shaped our oldest daughter’s life
Growing up with a chronically ill parent had a big impact on her identity
The name Alexa is of Greek origin and means “helper” or “defender of humankind.” Back in 1996, when my husband, Arman, and I were deciding on a name for our first child, we had no idea that this would perfectly describe the woman she’d grow up to be. We really just thought it was a beautiful name (and I loved it because Billy Joel’s daughter was also named Alexa).
From the moment we met Alexa (or Lexy, as we call her), she was the light of our lives — always happy, smiling, laughing, singing, and dancing her way through life. Arman and I were soon blessed to have two more children, and Lexy was (and is) a fantastic role model who’s taken great care of her siblings, just as her name describes.
Lexy and I recently spoke about her first memories of her dad’s early-onset Parkinson’s disease. She was in her final year of middle school when she began to notice some subtle differences around our house. For example, multiple pill bottles were slowly appearing in our bathroom, which she’d never seen in our home before. She thought about researching the medications, but ultimately decided not to.
Her dad wasn’t acting as he usually did, but she couldn’t figure out what was going on; he was just different.
Lexy remembers specific events that occurred the day we told her about Arman’s Parkinson’s diagnosis, but she has trouble recalling the conversation itself, almost as if she’s blocked it out.
We had dinner at a restaurant that evening, and as we were leaving, she was incredibly irritated (and a little bratty) while waiting in the car for her dad. At 13, all she wanted to do was get to a party, and waiting even one minute longer seemed like pure torture. The tension in the car on the ride home was unbearable for all of us. Little did she know that we were waiting because her dad was unable to walk, as his medications were not cooperating.
That night, we finally decided it was time to tell her about the diagnosis, explaining early-onset Parkinson’s and its symptoms, medications, life expectancy, and treatments.
We confided in Lexy about Arman’s diagnosis many months before we told friends and family, including our younger children. Looking back, it must’ve been an unbearable weight for a 13-year-old to carry, but it seemed to be the right choice at the time. We didn’t feel it was appropriate to lie to our daughter when she had many questions and valid concerns.
I recently asked her if she shared our secret with anyone at the time, and she explained that she didn’t, because she knew it wasn’t an option. Keeping this devastating and private information inside her 13-year-old mind while also dealing with typical teen dilemmas was an immense burden that no child should have to endure. In addition to the secret, she was dealing with debilitating fear, anxiety, and uncertainty about her dad and his health.
Lexy explained that her entire identity is rooted in Parkinson’s and her dad’s diagnosis. As a result, all of her decisions regarding her career, education, and life in general have been guided by our family situation.
As Arman’s Parkinson’s has progressed, Lexy has observed that I, in addition to having a busy career and being an active volunteer, mother, and now caregiver, have slowly taken over responsibilities in our home that were originally Arman’s. She’s inspired not only by her dad’s willingness to let me take the lead, but also by the reminder that women can truly do anything they set their minds to.
Alexa, as she now prefers, is a 26-year-old lawyer, passionate about helping the underdog, a true defender of humankind. Her middle name should’ve been “Butterfly” because she’s traveled the world, already visiting 36 countries. She was an English teaching assistant in Bulgaria as a Fulbright Scholar and is currently a legal clerk for a U.S. judge in the Caribbean. My eldest daughter has done more in her short 26 years than many do in a lifetime, which she attributes to her need to fulfill all of her dreams early in life, just in case.
Growing up with a chronically ill parent taught her (and her siblings) about empathy, kindness, inclusion, and the fragility of life. I’m proud to say that all the struggles have shaped her into the strong and independent woman she is today.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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Joanne Eckert
I’m in awe of this family’s compassion. It’s the TRUE way a family should be. Sadly, my son was diagnosed with early onset Parkinson’s at the age of 42. About 4 years later, his wife announced she wanted a divorce. They have 5 young children together. She’s had other men in her life for the last 2 years unbeknownst to us and the divorce is not even final. Our hearts are ripped apart. My husband and I live 3 hours away from them. I pray for my son’s wife. I don’t know how anyone could be so completely heartless. I know my son will be healed. We stand on God’s Word. God bless one and all.