My Brain, Cognition, Side Effects... Who Is the REAL Me?
Last updated: October 2022
I've constantly been on medications for the last 52 of my 59 years.
With 20/20 hindsight, my epilepsy and my unemployability at the time were clearly a blessing because I was available to assist my Dad in caring for Mom during her long death. Over 12 years, she took a shop full of medications – some just to weaken the side effects of other medications! Parkinson's Disease was a major contributor to her suffering. During the 18 years following her death, I'm increasingly concerned about the side effects of my own epileptic medications.
Is it my epilepsy medication? Or something else?
My doubts increase daily since my father died with severe dementia last year. How can I know if some of my moodiness, forgetfulness, drowsiness, and clumsiness that pharmacists chalk up as side effects to my epileptic medications might actually be the prelude to Parkinson's? Or worse, Alzheimer's? Memories of my grandfather's last year with Alzheimer's are terrifying.
Nevertheless, experts say that all 3 of these diseases can be lessened and maybe stopped with early detection. But when so many epileptic medications have side effects similar to symptoms of those diseases, how can we know? We might miss the chance for treatment of diseases worse than epilepsy!
Wanderings of my epileptic brain
In the last decade, whenever I'm lonely and idle, I'm haunted by mental images. I've imagined being microscopic and prowling through my own brain cavity on catwalks. I see strange globules with protruding arms, which I guess are neurons. They're like looking at intermingling stellar nebula I've seen from the Webb space telescope.
Some might be dark, so I'm stunned when a lightning bolt jumps from one to another with a noise like thunder. Some are sending those bolts as frequently as lights in Las Vegas while other areas are like a dismal rural village. Others seem burned out however long I stare at them. What's "working" and what isn’t?
Part of this image is coming to a doorway. It creaks as loud as the thunder behind me when I pull the doorknob – undoubtedly because it hasn’t been entered for a very long time. Something resembling scores of giant computer "motherboards" are standing from the floor to the ceiling, row upon row, and the only thing to be heard are my footsteps and breathing.
What is really affecting my cognition?
I'm constantly brushing away the cobwebs draping the room from the ceiling, and dust on the floor is like a light snow. Is this part of my brain that was deactivated when I started taking Phenobarbital over half a century ago?
Or going back further, might this be circuitry that was broken 5 years earlier by the head injury that induced my epilepsy after falling down a stairway? Did that cease the flow of electricity to this room, or did medications over the years clog up whatever activity used to go on here?
Without being off any medications at all since then, and all of them having side effects, might this now-inoperative room harbor the essence of the "REAL ME"?
Memory problems and clumsiness
I consider myself to be more positive and balanced than 95% of all people being treated for epilepsy, even if I can't drive and forget a stranger's name within 2 minutes of being introduced. Speaking of memory issues –recently, I did 107 takes of a 50-second commercial for my TV show even though the script was drafted by me. And my clumsiness was annoying enough to my daughter that she stopped playing pitch-and-catch with me to practice her baseball with someone better.
I still consider myself to be a positive role model for others, but that doesn't negate the fact I wonder at least once a day: Who is the REAL me?
Who would I be without epilepsy? Without side effects?
Had it not been for that head injury, and the candy store of medications with their roller coasters of side effects, would I be totally unrecognizable from the person with the essence by which people identify me today as "Timothy Martin Ulmer"?
Would I be the kind of guy who sets off fireworks by entering a room? Would my wits be sharp enough to raise a vital point during an argument at the time it needs to be said, like a cunning trial lawyer, rather than when I'm replaying the scenario in my mind in afterward? Would I be fast enough to save the soldiers in my platoon during an ambush in Afghanistan? Would I be contributing to the intricacies that get a NASA rocket to return to the moon?
Was anything like the "coding" for those qualities programmed anywhere in that abandoned room? Or is there another room that's circuits are still operating, but their outputs have become like clogged rain gutters because of my medications? Maybe there are other rooms preparing to shut down because Parkinson's is beginning an invasion?
Getting a neuropsychological evaluation
It concerned me enough to talk to my neurologist. He recommended a psychologist who gave me a neuropsychological evaluation. This test was to measure whether my current cognitive impairments have anything to do with the onset of Parkinson's, Alzheimer's, or dementia. It was a 2-hour process.
During a timed test, I read a series of 2 sentences and chose which one was most like a third sentence. My reading comprehension was tested with a timed multiple-choice test. I was also shown a group of figures and had to determine which 1 didn't belong in the group. There was another test where the doctor laid 16 multi-colored cubes into neat patterns before messing them up, then gave me 2 minutes to match each pattern exactly.
I felt dumbstruck. But somehow through all that, he was able to determine that I was not experiencing any symptoms of those diseases. Rather, the cause was either the results of my original injury and/or the pharmaceutical side effects.
Fears about cognition and aging with epilepsy
I hear enough people at my support group mentioning similar concerns about their sanity – whether they have the daring to admit it. However, for middle-aged people who've been epileptic for decades, I heartily recommend taking such a test in case their abilities might be weakening because of the onslaught of worse diseases. That psychologist recommended that I repeat it every 5 years like people should check for cancer.
However dark my concerns are, never stop loving who we are. Never stop inventorying our strengths and surveying for new opportunities to use them in helping others. Keep ourselves too busy for pointless nightmares of who we missed out on being or how we got to this point.
I must accept that I will never know what the function was of that room in my brain.
Since being diagnosed with epilepsy, has your memory been impacted?