Our Parkinson’s story isn’t a sad one — it’s just ours
Getting a scary diagnosis doesn't mean we can't find joy in what we can still do
I’ve been fortunate to have the opportunity to tell our story through this column, “The Bright Side.” My main goal in sharing our family’s story with the world was to help others dealing with similar situations. I also hope readers won’t feel so alone in their fight against Parkinson’s disease.
Before I began writing, we were incredibly private about our life and the path that early-onset Parkinson’s disease has dragged us down since my husband, Arman, was diagnosed in 2009. But when I saw an opportunity to share the stories of our lives and make a difference in the Parkinson’s community, I was elated to have the chance. I know people see their experiences through different lenses, and I hope my readers enjoy my personal perspective.
This column has become a therapeutic way to revisit our journey. It’s been helpful for me to reflect on memories of Arman’s diagnosis, treatments (including thousands of pills), surgeries, doctor appointments, hospitalizations, and everything in between.
But it’s all for a larger purpose.
It won’t break us
The one thing I want to emphasize is that our story isn’t a sad one; it’s just our story. Even though Arman was diagnosed at 38 years old, our world didn’t collapse. Sure, the challenges of Parkinson’s wear on us every single day — some days more than others — but they don’t break us. We can’t allow the beast to win, so we choose to fight harder and stronger every minute of every day.
We’re not looking for pity or tears, but rather positivity and support. We don’t sit around feeling sorry for ourselves; it’s actually the opposite. We feel fortunate that he doesn’t have a fatal illness, and we know that things could always be worse.
I’m hopeful that readers just beginning to deal with Parkinson’s can learn from our experiences. The diagnosis can be terrifying and overwhelming, and you may feel like your life is over. Grieving is a normal reaction, and each person will have a different process and timeline of acceptance. Some may never accept the news and continue to question it. “Maybe the doctor was wrong,” you might think. Or “Could it be a different disease?” Or “How could this happen to me?”
I questioned Arman’s diagnosis for many years. It seemed almost surreal that this disease was happening to my family.
As for grieving, I still battle with those feelings, and I don’t expect them to pass. But I do my best to create a full life for my husband and children despite Parkinson’s. We don’t dwell on what we might be missing or can’t do. Instead, we focus on everything we can do and try to enjoy life to its fullest.
A few weeks back, we were at our niece’s wedding, surrounded by love and joy for four straight days. It was a weekend made in heaven.
Before his diagnosis, Arman never got excited about dancing. We even failed the ballroom dancing course we took before our wedding! At special events, I’m disappointed that he can’t join in since dancing is simply too dangerous for him. But instead of sulking about it, he finds joy in watching others, which can be lots of fun — and even comical!
Life doesn’t always present us with choices. But one choice that’s always in our hands is our attitude. We get to choose how to respond to a Parkinson’s diagnosis. We get to decide how to react to being unable to dance at our niece’s wedding.
No matter your circumstances, make your choice a good one.
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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Comments
Daniel Novak
My remembrances of my dancing [years ago] far exceed my actual skills [back then]!
Observing and knowing I have an excuse [not to dance] is less stressful and more enjoyable!
Jamie Askari
Thanks for sharing! It sounds like you have a lot in common with my husband! Appreciate you reading.