Becoming an expert on my husband’s early-onset Parkinson’s

When my husband, Arman, was diagnosed in 2009 with early-onset Parkinson’s disease at the age of 38, I learned everything I could about it.

I purchased every book I could get my hands on and searched the internet several times a day. I educated myself about the various types of Parkinson’s, as well as the symptoms, medications, side effects, clinical trials, and more. I thought that if I understood every detail about Parkinson’s, maybe we would be spared some of the disease’s awful effects.

I also tried to overprepare, hoping that my preparations would never be needed. Wouldn’t it be great if that actually worked?

Over time, I began to understand that even though there’s so much valuable information to be learned from research and other reading, the only way to truly understand Parkinson’s disease is to live it.

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It seems that every single person with Parkinson’s has a unique version of the disease designed specifically for them. It’s certainly not a one-size-fits-all disease. As Arman’s wife and full-time caregiver, I’ve become an expert on his brand of early-onset Parkinson’s disease.

What exactly does the Arman version of early-onset Parkinson’s look like? Arman always jokes that “it’s not all sunshine and rainbows,” which is a paraphrase of a Rocky Balboa quote (and the inspiration for my column’s main graphic).

When Arman was diagnosed, his main symptoms were slowness, stiffness, and an intention tremor. Over time, he developed severe dyskinesia in his right leg, which would kick up high in the air with every step.

Years ago, on a trip to New York City, we were walking through Times Square headed to a Broadway show. The sidewalks were tightly packed with tourists, and Arman accidentally kicked at least a dozen people, maybe more. Kicking innocent tourists was not a chapter in my readings or research.

Another interesting trait that I didn’t learn from my research was that as soon as Arman fell asleep, so did his symptoms. He would be kicking uncontrollably and practically falling off the bed, but the moment he began to snore, his entire body calmed down.

As much as I disliked his snoring, it was always a relief to see him finally relaxing at the end of the day, even if it was only during sleep. I often wonder if all people with Parkinson’s are as lucky as we are to have their symptoms disappear while they sleep.

Finding some relief

Arman’s neurologist had been encouraging him to consider deep brain stimulation (DBS) for several years. Again, we learned everything about it and eventually made an educated decision to proceed with surgery. Immediately after he received DBS, the kicking disappeared. Our research had paid off, providing significant relief from debilitating dyskinesia. It’s one of the best outcomes that surgeries have provided for him.

As a caregiver, I’ve learned to expect the unexpected and take life as it comes. We may make plans for our lives, but Parkinson’s often makes its own. Educating ourselves about the disease has helped us navigate its unpredictable path.

As rigid as Parkinson’s has made Arman, we do our best to remain fluid. Arman may have Parkinson’s, but Parkinson’s doesn’t have us.

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.