Confronting the Parkinson’s Thief and Nonmotor Seizures

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by Dr. C |

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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!

***

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.

Comments

Deidre Joan WIld avatar

Deidre Joan WIld

First thank you for this gem of an article - just what I need! I am writing a book about 'making the best' of Parkinsinon's Disease. I suppose I have written some 8000 words and not much of a silverlining anywhere apart from 'it won't kill you!' i will persevere though because I do believe that the positive mind set and a sense of the ridiculous keeps me going almost as much as my Sinemet ...this however could be one page in a hundred. Folk might not think this a bargain! I think I had better keep watching your space.........

Deidre Wild, Professor Health Sciences (Visiting)

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Sukhi avatar

Sukhi

I love how you use humour to add to your perspective. I find that to be a strong quality as well. Being on the PD journey since 2010. I seem to have met up with the PD thief numerous times the past few years. Keep up the great writing.

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Cassini Saturn avatar

Cassini Saturn

Your loss of video gaming really stuck home for me - I'm crying as I write this. I don't have PD (yet), but my dear brother died from Multiple System Atrophy (MSA), and our adventures in auto racing games were important to both of us. The hand tremor impacted his controller abilities. These diseases are incredibly sad! I wish you the best. Perhaps the mRNA vaccine research will result in some treatment soon.

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Christine Collins avatar

Christine Collins

I'm 45 and have been diagnosed with cynical parkinsons... parkinsonism and dystonia. I have had symptoms for 10 years and going through my 3rd dat scan. I am scared and frustrated. Would love to hear other people's stories.

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Lori Kindberg avatar

Lori Kindberg

I have MS but my daughter has these symptoms and our Neuro doesn't seem to take it seriously. It scared me. She has "pseudo seizures, Bad Neurophathy, migraines, bipolar, anxiety, depression, terrible shakes, sweats, PCOD, ....gerd nausea, heart burn, what do I do?? HELP

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Jan Ankers avatar

Jan Ankers

Things seem to be heading in the right direction at last. I hope this group will keep me informed.

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Patricia Farmer avatar

Patricia Farmer

So nice to hear from someone that really is searching in every way possible to destroy this horrid disease.
I was diagnosed in 2013. Still trying to fathom why because no one in my family has ever had Parkinson's.
I am definitely all alone, with no family that wants to help me in any way. I am very resilient and very strong-willed and continue every day to fight and to keep going. I take care of everything I need to take care of by myself.
Just wanted to let you know that I do enjoy your comments on line.
Love and understanding to you with regards Pat.

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Desmond Veale avatar

Desmond Veale

I have wonderful children but they never talk about PD. It mames me feel all alone, particularly because I am widowed an very independent, I am now in Aged Care .

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Kelly Sunday avatar

Kelly Sunday

Looking for information on holistic treatments of Parkinson 's

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Patricia Taylour avatar

Patricia Taylour

I am looking for information on holistic treatments of Parkinson’s

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Tina avatar

Tina

I too was a brilliant professional, as stated by many during my career. At 55 I considered it a supreme loss when I was forced to retire because of seizure activity. I’ve had to adjust each day and learn how to refocus on what I can do that day, although it becomes less productive as well as more frustrating.

The golden benefit is that I now have finally learned how to enjoy simple things and be thankful for what I have, not what I have lost. Prayer, meditation, music, enjoying creation and the beautiful aspects of people around me are what keep me as cheerful as I can possibly be.

I still have hope that I can accomplish something each day until my last. I know as long as I focus on something beautiful that day I can. I hope everyone can find this peace of mind, which really is worth more than anything, and is actually everyone’s ultimate goal, especially in retirement

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Desmond Veale avatar

Desmond Veale

I have wonderful children but they never talk about PD. It mames m
e feel all alone, particularly because I am widowed an very independent, I am now in Aged Care .

Reply
Laura Kennedy Gould avatar

Laura Kennedy Gould

A great post, Dr. C. I would like to get your permission to use this quote in a future post in my blog ("The Magic Trick- Life with Parkinson's", https://magictrickparkinsons.wordpress.com/). The quote is: "When a door closes, I don't bang my head on it more than three times to make sure it is closed. I look for a new door to open." I've recently had to give up skiing and hiking, and lately even basic walking has become problematic. So I am still at the head banging stage....

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Dr. C avatar

Dr. C

Hi Laura ~ Please use the quote if you have found it relevant. You can attribute to "W. David Hoisington, Ph.D." if you post off Parkinson's News Today, or if you post on BioNews, you can attribute to "Dr. C." Hope you avoid the head-banging ... Gets kind of old always getting the headache! Hope you enjoy this week's column coming out Friday on becoming a "Parkinson's Olympian". For those of us, you and myself, who enjoyed so many physical activities, we have to find the time to recognize what we still can do!
Dr. C.

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Robert Barri Rabinowitz avatar

Robert Barri Rabinowitz

Gladto have to to have up to date Information available so that I can better understanding of the disease that affectsme.

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