How a Young-onset Parkinson’s Diagnosis Changes the Family Dynamic

How a Young-onset Parkinson’s Diagnosis Changes the Family Dynamic
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A parent’s diagnosis of young-onset Parkinson’s disease can affect children at at any age, particularly because the diagnosis has a profound impact on the parent. Many of these kids seem to grow up faster than their peers.

Some are young enough when a parent is diagnosed that they will only know a life with Parkinson’s in the family. Older children, however, remember life before their parent’s diagnosis.

My boys, Zach, Ryan, and Adam, were 13, 18, and 21, respectively, when I was diagnosed. Would knowing Mom without Parkinson’s and seeing how it has changed her be better or worse than knowing Mom only with Parkinson’s disease?

I believe that each scenario has its pros and cons.

Zachary was in seventh grade when I was diagnosed so I’ve had Parkinson’s during his middle and high school years. The teenage years of any child are tough enough, and adding my diagnosis to the mix certainly didn’t make it easier for him. In addition to normal teenage angst, Zachary had a mother who was trying to wrap her head around a life-changing diagnosis.

It’s painful to admit, but I didn’t handle it well. My diagnosis consumed our lives for the first year, especially mine. Zachary still relied on me for his day-to-day activities, but it was difficult. And Parkinson’s was such a strong influence on his life, I’m not sure if he remembers what life was like without it.

Meanwhile, Ryan was a senior in high school when I was diagnosed, and Adam was away at college. I assumed that being older gave them the ability to process it without relying on me. Because they were young adults, I believe my diagnosis didn’t affect their day-to-day lives as significantly as it did Zachary’s.

However, they did notice how I responded to it, which changed how they treated me. It wasn’t good or bad, it was just different. It still is six years later. 

Our family dynamic has changed.

I am still a mom, but the boys have an added level of concern for me now. While they still see me as the “fixer” in the family when issues arise, they also try to shelter me from anything that might, in their words, “freak me out.” Just as I have adjusted and adapted, so have they. And in doing so, they have assumed the role of protector, a job that belonged to my husband or me when they were younger.

There is no doubt I am stronger now than I was six years ago. My kids know that, but it wasn’t always that way. When they were younger, they probably had many questions and were scared of what “Mom was going to look like.” I couldn’t provide any answers or ease their fears at the time, but I did know that my husband, other family members, and friends would support them. I have since learned that it is OK not to be OK, and that I should trust my support system

Recently, my Aunt Gail told me that Parkinson’s has made me stronger. That may be true, but it also has made the rest of my family stronger, too — especially the boys. That doesn’t mean that my boys no longer need their mom. It means that I need them, and that my support system has gotten a little bit bigger.

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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.

When Lori discovered at 45 that she had young-onset Parkinson’s, she struggled with her diagnosis but decided to attack it with the same tenacity, passion, and care she brought to her career as an engineer, marriage, and motherhood (of 3 boys). Now, at 52, Lori is also a writer, a Rock Steady Boxing Coach, and a personal trainer pursuing her passion of empowering others with Parkinson’s. She hopes her column, “Life, Lemons & Lemonade,” exemplifies something she learned from dancing with her husband, Mike: ”It’s not important HOW you dance. It’s THAT you dance.”
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When Lori discovered at 45 that she had young-onset Parkinson’s, she struggled with her diagnosis but decided to attack it with the same tenacity, passion, and care she brought to her career as an engineer, marriage, and motherhood (of 3 boys). Now, at 52, Lori is also a writer, a Rock Steady Boxing Coach, and a personal trainer pursuing her passion of empowering others with Parkinson’s. She hopes her column, “Life, Lemons & Lemonade,” exemplifies something she learned from dancing with her husband, Mike: ”It’s not important HOW you dance. It’s THAT you dance.”
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