We all know people who suffer or have suffered with serious cognitive decline or Alzheimer’s Disease. I can readily count at least five close friends who care for afflicted parents. And while my own parents’ cognitive abilities are unimpaired at age 80, my dear friend whom I consider a special auntie, has cognitive decline so severe that she’s incapable of real conversations. The most significant way I can connect during our visits is to hold her hand and sing to her.
Currently, 6.9 million Americans have Alzheimer’s. As our population ages, that number is projected to increase to 12.7 million by 2050, barring the development of medical breakthroughs to prevent or cure it. Given the statistics and my own personal experience, I was quite disturbed by the study I read last week, linking childhood epilepsy to higher chances of memory disorders later in life.
Run by the University of Wisconsin in conjunction with two Finnish universities, the study found that individuals with childhood epilepsy have increased brain amyloid accumulation later in life, potentially predisposing them to late-onset brain amyloid disorders, such as Alzheimer’s Disease. These researchers found that amyloid build up is almost three times higher for those of us with childhood epilepsy than the general population. Amyloid build up is a condition where abnormal amyloid proteins accumulate in the body’s tissues and organs. As I read the study, I envisioned a special toothbrush-like gadget that I could apply to my brain, to scrub off all those amyloid sweaters that had piled up in my head over the years.
While the findings were troubling, the study is inspirational. Initiated by Dr. Matti Sillanpää, the study has monitored the health and prognosis of the same individuals with early onset epilepsy and their control subjects for 33 years. They were diagnosed in the early 1960’s about a decade before my own childhood diagnosis (a rough period I describe in my memoir, Seizing Control). There was far less known about epilepsy during these years, so I imagine the subjects’ families going to doctors’ offices, desperate for answers and effective treatment plans. Perhaps that made them more open to participating in a long-term study. The follow-up, which continues to this day, is conducted at regular intervals by domestic and international researchers. The study’s results offer unique information about childhood epilepsy’s long-term effects on the brain. Dr. Sillanpää is still overseeing the project at age 89. I am grateful for his and his 71 study participants’ commitment.
Like epilepsy, the search for an Alzheimer’s Disease cure has been slow, long, and unsuccessful to date. There have been multiple initially promising treatments that were subsequently ineffective, as well as ongoing controversy over competing theories about how Alzheimer’s damages the brain. Apparently, researchers have found that a linear causal relationship between amyloid buildup and Alzheimer’s is too simple. Studies have unveiled the vast complexity of changes occurring over decades in the brains of individuals as Alzheimer’s pathologies emerge.
Since the 1992 launch of Dr. Sillanpää’s study, the neuroscience field has progressed exponentially. In addition to new epilepsy and Alzheimer’s Disease medications, brain imaging devices are far more precise than they were when Dr. Sillanpää’s subjects were diagnosed. Last spring I blogged about Harvard-based neuroscientists’ creation of the first digital brain map, created from a tiny human brain sample. Experts in the field said the map is transforming scientists’ understanding of the human brain, improving doctors’ ability to cure neurological diseases, including epilepsy and Alzheimer’s.
While recent research achievements and Dr. Sillanpää’s commitment level both leave me hopeful, the state neuroscientific research funding is in a precarious place, given the recent presidential administration shift. This week, the National Institute of Health (NIH), which oversees research on the causes, diagnosis, prevention, and cure of most human diseases, canceled meetings to review grant applications, a step that has health researchers and scientists on edge. The NIH oversees a multitude of neuroscience projects, including the Brain Research Through Advancing Innovative Neurotechnologies, a.k.a. the BRAIN Initiative, whose funding was cut in 2024. So, despite those awe-inspiring digital brain maps, and scientists’ high commitment levels, the solutions for refractory epilepsy and Alzheimer’s Disease will be delayed in the short term. The neuroscience community is likely wary, waiting to see what directives the new NIH director will send in the coming weeks. Unfortunately, it seems unlikely that they’ll be able to create my imagined amyloid-sweater-removal device anytime soon.
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