Confronting the Parkinson’s Thief and Nonmotor Seizures

The Parkinson’s thief has stolen something else: my enjoyment of video gaming. My writings are filled with uplifting possibilities, but the Parkinson’s thief strikes relentlessly. The loss of video gaming is gut-wrenching.

Video games have been a tool for me, and I have been interviewed about the topic. I spent six months organizing my life so that I could dive into a new game being released at the end of July. Now that’s not happening, and I’m pretty bummed.

The problem is that video games now trigger simple partial seizures after about an hour of playing. The seizures are unsurprising, as I have been diagnosed. I just didn’t expect them during gaming.

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They start with lightheadedness and end with intense vertigo, throat-gagging nausea, and intense sweating — all in the span of five minutes. If I ignore the symptoms, continually returning to the game and exposing myself to multiple seizure episodes, then exaggerated flooding emotions follow. At that point, it becomes impossible to continue playing that day, and it takes me days to recover.

Seizures have been associated with Parkinson’s disease, but studies are sparse.

A 2019 article published in the journal US Neurology states, “These NMS-PD [non-motor symptoms of Parkinson’s disease] can occur at all disease stages yet are poorly understood and lack effective therapies. … While connectome dysfunction is better recognized in Alzheimer’s disease (AD), its clinical relevance in PD remains to be fully appreciated. Moreover, while AD has been significantly associated with an increased incidence of epileptic activity, only in recent times [have similar findings] been reported in patients with PD.”

There is typically a warning at the beginning of many games advising players who have seizure disorders about the risk of being triggered. I saw the warning and proceeded anyway. Maybe it wouldn’t happen to me, I thought. But the PD thief has ripped from me another source of enjoyment.

Video games provide a mental retreat that is not connected to writing or disease management work. Simply put, the shift into a playful state of mind helps with both. That mental retreat is now gone, and I am really bummed.

Walking around after the seizure charged the air at our house, any spark was going to set it off. Today, Mrs. Dr. C and I quarreled, something that rarely happens. It was about a difficulty with computer mechanics. But it could just as well have been about the red tanager that targets our porch window as his personal bathroom.

Combine this heated argument with sweltering temperatures, and I’m one step closer to crossing the threshold. Throw in the nonmotor seizures and I’m over the line.

That night, as I headed to bed totally exhausted, I unconsciously stopped at the foot of the bed. Well, gait freezing before bed is a first for me, I said to myself as I checked in on my thoughts and feelings. But it wasn’t exactly gait freezing. I purposely stopped walking because I didn’t want to crawl back into that tomb. It felt like an invitation for the PD thief to ravage my life once more. What’s left to take?

I’m new to this “facing my own mortality” thing. I read Atul Gawande’s book “Being Mortal.” My brain is filled with dark suffering images of cold hospitals and lonely nursing homes. I know eventually my body will fail and I will move on to whatever’s after this. But I’m just not ready. I have more I want to accomplish.

It’s just hard some days to get up and show up one more time, knowing that the PD thief will be back. What keeps me moving forward is the passion for sharing insights along the journey through life, including Parkinson’s disease.

Each of us is blessed with something we do very well. Some are fortunate enough to find this early in life, and if practiced for decades, develop it to expertise. That blessing for me has been the ability to shift perspective even during the most difficult times. My use of the phrase “a fresh look” refers to doing this shift with PD. Being able to shift perspective is one of the qualities that researchers ascribe to human resilience. It is this resilience that helps me recover from the kick in the gut by the PD thief.

When a door closes, I don’t bang my head on it more than three times, making sure it is closed. I look for a new door to open. I am returning to write for Bionews, the publisher of Parkinson’s News Today, every week. I’m a little nervous, as this disease is noticeably progressing, so wish me luck and resilience!

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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.