I've been lurking on this site for a few years now, so I thought it was probably time for me to create an account and share my story and journey, and hopefully find some small way to contribute.
I found out my APOE e3/e4 status a few years ago. The reason for undergoing the test was many years of ongoing memory and cognitive concerns which began over ten years ago, which I’ll go into below.
So a little about me—I'm a 48-year-old guy who has always been in good physical health. I did well in school and completed undergraduate and grad degrees in engineering. My memory was never stellar (I have always
had problems with names) but nothing that seemed out of the ordinary through early adulthood.
By the time I reached my mid-30s, however, I noticed subtle signs that something was "not right" with my brain. Sometimes I would see a word on the screen or on a page that looked strange or out of place, as if someone had deleted the definition of that word from my brain. Recall seemed more difficult and many memories just seemed fuzzy. On top of that, wrapping my head around complicated projects and topics just seemed to be a lot more effort. Getting though a few hours of work was mentally exhausting and I was beginning to feel like my brain was a 5-pound sack that couldn’t handle the 90 pounds of material that it used to hold.
Around the same time I was noticing that I was having trouble finding the right words and other anomic aphasia and paraphasia such as using yearly
instead of monthly
, or garage
. Close friends would always correct me and jokingly say "ok Grandpa.” I was also noticing problems spelling and typing where I would randomly substitute similarly spelled words as well as leaving off suffixes or the 's' on plurals.
Since I watched my grandmother go downhill with Alzheimer's in her early 70's and my uncle (her son and my dad’s older brother) succumb to spontaneous Creutzfeldt–Jakob disease that year, I was beginning to get very concerned about my own cognitive issues, especially when I learned of the potential for the early onset form of Alzheimer’s and the genetic influences. Combined with my lifelong history of recurrent major depression and dysthemia, I wondered if I was doomed to losing my mind to dementia in the next few years.
I consulted with a neurologist, who performed a brain MRI and EEG, both of which came back unremarkable. His explanation was that my memory issues were a function of depression, and that I should just increase my SSRI dosage. When that didn’t alleviate my issues, about a year later I turned to the memory clinic at a local university for a neuropsychological evaluation. My functional score and IQ were extremely high (I had great short-term memory!), though the results did show that I had intermediate-level inattentive attention deficit disorder (ADD). In a way this was a blessing in disguise, as life was a constant struggle to juggle everything in my brain sometimes and try to function "normally" as it appeared everyone else around me was able to do. I wondered at this point if my cognitive difficulties were just a function of not paying attention enough.
I tried some ADD medications of the next few years, and while they helped me with focus and motivation (Adderall was incredible btw), they didn’t necessarily address my memory deficiencies and the side effects of each began to be unbearable.
By early 2012, I was really tired on the daily memory “dropouts,” slow memory and brain fog as if my hard drive was constantly losing sectors of data and spinning endlessly when trying to remember a name or fact that I may have just used the day before. I went to the Mayo Clinic where I thought I would surely be able to undergo an amyloid brain scan or other biomarker tests to figure out what was going on. Instead they only performed a basic neuropsych exam and basically told me I was dealing with anxiety issues.
Finally that summer, I saw that a test was offered for APOE gene testing by mail. I decided to take the plunge. Unfortunately I got the results about six weeks later at the worst possible time when I was considering making a major job change across county and walking away from a house with an underwater mortgage. Needless to say, the news of my e4 status combined with the stress of an impeding life decision and lack of sleep sent me spiraling down into the sixth and most devastating major depression of my life. I had hallucinations of my life withering away due to dementia and suffered a complete nervous breakdown for several weeks. I seriously thought I would need to be institutionalized.
Slowly but surely I was able to recover and get my life pulled back together over the next months. After another year, I was finally able to take on a new job in a different part of the country. This has been especially challenging since I deal with many of the same memory deficits and cognitive issues daily, but am trying to see it as a minor disability and stay positive in the hopes that neurological breakthroughs are happening everyday, which is big reason why I am here.
I don’t know how much of what I’ve been dealing with is related to my e4 gene status, but I feel it is part of the puzzle and hope that this genetic knowledge can make a positive difference to each one of our lives. Thanks for reading!