How opening up about living with Parkinson’s has been beneficial

Until recently, my husband, Arman, and I have been very private about his Parkinson’s diagnosis and our life dealing with the disease. He was diagnosed in 2009 with early-onset Parkinson’s at age 38.

Before I started writing this column, titled “The Bright Side,” only our closest friends and family knew the specifics about Arman’s diagnosis and our day-to-day life with Parkinson’s disease. Additionally, I’ve always preferred to handle things independently and never felt comfortable asking for or accepting help.

Since I began writing the column, friends and family have showered me with abundant praise and support. My initial goal in writing for Parkinson’s News Today was to be a positive influence and help others dealing with similar issues. I was excited to learn that friends and family have also found my writing helpful. They’ve commented on how enlightening it has been to learn more about our situation and how they can be supportive.

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After reading one of my columns, a close friend told me she was unaware that Arman has such a significant risk for falls. She was happy I alerted her to this issue and offered to help. Writing for Parkinson’s News Today has provided me with a fantastic platform to educate friends and strangers alike about the struggles of daily life with Parkinson’s disease.

Another friend mentioned that she wished she’d been able to read my column earlier to help her better understand our situation. We talked about a dinner we had together, and her husband felt terrible about the meal he’d made. He’d prepared a delicious barbecue, but Arman had difficulty cutting it. I almost cried when she told me how upset her husband was and how he wanted to have us over again for a Parkinson’s-friendly meal. His empathy and kindness were touching.

Building understanding

One important lesson I’ve learned is that while keeping every detail of Parkinson’s private may feel more comfortable, it can make it more difficult for others to be helpful and understand our situation. When I say, “Arman isn’t feeling well,” my sister recently asked me, “What does that mean, exactly? What bothers him? Is Parkinson’s painful?” I tried my best to explain how Parkinson’s “feels” and how it can be debilitating at unpredictable times.

Parkinson’s is not a simple disease to keep private. Many people with Parkinson’s choose to keep their diagnosis a secret for a variety of reasons. But as progression takes hold, it becomes very challenging to remain private.

For families dealing with a new diagnosis, or even those who have had Parkinson’s in their life for a long time, I hope this sheds some light on the experience. It is important to weigh the need for privacy versus the benefits of having an understanding and compassionate support system.

For our family, it has been a process of opening up and slowly sharing more about our experiences. It has felt like a heavy burden was lifted off our shoulders. The sense of relief that comes with an open and honest conversation can be a simple way to unload a significant amount of stress.

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.