Would You Want to Know a Decade Early If You Were Getting Alzheimer's?
Editor's Note: A team of researchers in Italy recently used artificial intelligence and machine learning to diagnose Alzheimer's disease on a brain scan an entire decade before symptoms show up in the patient. While some people argue that early detection is critical, others believe the knowledge would do more harm than good. LeapsMag invited contributors with opposite opinions to share their perspectives.
I first realized something was wrong with my dad when I came home for Thanksgiving 20 years ago.
I hadn't seen my family for more than a year after moving from New York to California. My father was meticulous, a multi-shower a day man, a regular Beau Brummell. He was never officially diagnosed with dementia, but it was easy to figure out after he stopped leaving the house, stopped reading, stopped being himself. My mother knew, but she never sought help. After his illness showed itself, I asked her if she considered a nursing home. "Never," she told me. "I can take care of him." And she did.
She gave herself a break once to visit me, and it was the first time she traveled separately from him since they eloped at seventeen. My brother watched my father, and it was not smooth. Dad was angry, hallucinating, and demanding his gun, which had been disposed of long ago. While Mom was visiting me in California, we played some board games. One demanded honest answers. The card read, What are you most afraid of? "Dementia," she said.
My father never saw this coming, none of us did.
Dementia ran on my mother's side. Her mother, my Nana, was senile, the popular diagnosis for older folks back then. My grandfather tried his hardest to take care of her, but she kept escaping their tidy 6th floor apartment to run away. My mother would go over every day to take care of them, but once my grandfather became ill, she took her mother into our apartment. She had two small children, Nana, and her husband in a two-bedroom flat. Nana talked to people under plates, wore tissues on her head, and tried to escape. We were on the first floor, so she could run into traffic if all eyes weren't on her. Soon, it was too much, even for my Wonder Woman mom. Nana was placed in a nursing home and died soon after.
My mother dropped dead on a NYC sidewalk two years after my father started to deteriorate. She was probably going to the store to buy milk and cigarettes. A kind stranger called 911, and a cop came to my parent's door soon after to tell my dad the news. My father cried for death, raged and ranted, then calmed down enough to come back as the dad we remembered for the week of mourning. He even ordered a Manhattan at dinner. His death came exactly a week and an hour after my mother's. He died of a broken heart. My husband cried with all his body after we left the cemetery, weeping, "Poor Buck. Poor Buck." I never saw him cry before.
Now, 18 years later, I sit here with my husband, 59 years old, as he suffers from the same hideous disease.
He is talking to someone I can't see, even laughing with him. He holds a Ph.D. in literature, taught college, had a single handicap golf game, and ate well. We never saw this coming. One day he went to type and jumbled letters came on the screen. He would show up late or early for his classes, wondering what was wrong with the students. He started running red lights. He was graciously counseled to retire, and he did, at 55. His doctor told him it was depression. The second opinion agreed. He was told to do nothing for a year, and he did. He played golf a bit, then one day he couldn't speak or think clearly. I came home from work to find him roaming the neighborhood, eyes ablaze, muttering to himself. I went on family leave. Many tests later we got the working diagnosis, but it meant nothing to him. He never reacted to the words Primary Progressive Aphasia or dementia. I was glad. If he was lucid, I knew what he would talk about doing. He told me after my dad's death that he did not want that life for himself.
I worry I may get it, too. It almost seems inescapable. Dementia has no cure, and the treatments for the symptoms are hit and miss. I thought about getting the full flight of predictive tests, but I know myself, and I scare myself into bracing for the worst. Others scare me, too, when I read their online statements about ending their lives if they learn they have it: I told my children to take me to a state where assisted suicide is legal; it's easy to overdose; I don't want to be a burden on my children. These are caregivers on social media forums. They live with the terror, eyes wide open. We have no children, but who would I burden? My sisters? My brother? Do I stay or do I go? This disease invites pandemonium. Assisted murder-suicides with caregiver spouses of those with dementia don't merit headlines, but their stories are on the sidebars. No thanks. I work on God's timeline.
There are no survivors – yet.
A diagnosis today would paralyze me and create melancholy for all who know me. I would second guess everything, I would read everything, I would cry, I would hardly live. I would be tempted to pick up that first drink after 20 plus years sober. I would even think about ending my life. It would be difficult not to consider. As a high school English teacher, I talk about suicide when I teach Hamlet. I tell the students suicide is a permanent solution to a temporary problem. Dementia isn't temporary. There are no survivors – yet.
I often think what my relatives would have done with an advance diagnosis. My grandmother was a classic worrier. She would have been beyond distraught. My father might have found that gun. My husband would have taken the right number of pills.
An advance diagnosis would paralyze me.
I appreciate the arguments for early diagnosis. Some people are made of sterner stuff. They have the mindset I lack. I admire so many who are contributing to the current conversation about dementia and are active advocates for a cure. They have found a purpose in their fate.
I don't need a test to get my ducks in a row. Loving those with dementia has prompted me to be prepared. I have a different type of bucket list: reset my priorities, slow down, be present, educate others, and make my legal plans. If and when it happens, there will be time for toast and tea and a walk along the shore. There will be time to plan for the inevitable and unenviable end. I am morbid enough to know I will recognize the purple elephant in the room. I don't want the shock and awe now. I can wait. My sisters agree. We will keep our elbows out.
Editor's Note: Consider the other side of the argument here.
If you look back on the last century of scientific achievements, you might notice that most of the scientists we celebrate are overwhelmingly white, while scientists of color take a backseat. Since the Nobel Prize was introduced in 1901, for example, no black scientists have landed this prestigious award.
The work of black women scientists has gone unrecognized in particular. Their work uncredited and often stolen, black women have nevertheless contributed to some of the most important advancements of the last 100 years, from the polio vaccine to GPS.
Here are five black women who have changed science forever.
Dr. May Edward Chinn
Dr. May Edward Chinn practicing medicine in Harlem
George B. Davis, PhD.
Chinn was born to poor parents in New York City just before the start of the 20th century. Although she showed great promise as a pianist, playing with the legendary musician Paul Robeson throughout the 1920s, she decided to study medicine instead. Chinn, like other black doctors of the time, were barred from studying or practicing in New York hospitals. So Chinn formed a private practice and made house calls, sometimes operating in patients’ living rooms, using an ironing board as a makeshift operating table.
Chinn worked among the city’s poor, and in doing this, started to notice her patients had late-stage cancers that often had gone undetected or untreated for years. To learn more about cancer and its prevention, Chinn begged information off white doctors who were willing to share with her, and even accompanied her patients to other clinic appointments in the city, claiming to be the family physician. Chinn took this information and integrated it into her own practice, creating guidelines for early cancer detection that were revolutionary at the time—for instance, checking patient health histories, checking family histories, performing routine pap smears, and screening patients for cancer even before they showed symptoms. For years, Chinn was the only black female doctor working in Harlem, and she continued to work closely with the poor and advocate for early cancer screenings until she retired at age 81.
Alice Ball
Pictorial Press Ltd/Alamy
Alice Ball was a chemist best known for her groundbreaking work on the development of the “Ball Method,” the first successful treatment for those suffering from leprosy during the early 20th century.
In 1916, while she was an undergraduate student at the University of Hawaii, Ball studied the effects of Chaulmoogra oil in treating leprosy. This oil was a well-established therapy in Asian countries, but it had such a foul taste and led to such unpleasant side effects that many patients refused to take it.
So Ball developed a method to isolate and extract the active compounds from Chaulmoogra oil to create an injectable medicine. This marked a significant breakthrough in leprosy treatment and became the standard of care for several decades afterward.
Unfortunately, Ball died before she could publish her results, and credit for this discovery was given to another scientist. One of her colleagues, however, was able to properly credit her in a publication in 1922.
Henrietta Lacks
onathan Newton/The Washington Post/Getty
The person who arguably contributed the most to scientific research in the last century, surprisingly, wasn’t even a scientist. Henrietta Lacks was a tobacco farmer and mother of five children who lived in Maryland during the 1940s. In 1951, Lacks visited Johns Hopkins Hospital where doctors found a cancerous tumor on her cervix. Before treating the tumor, the doctor who examined Lacks clipped two small samples of tissue from Lacks’ cervix without her knowledge or consent—something unthinkable today thanks to informed consent practices, but commonplace back then.
As Lacks underwent treatment for her cancer, her tissue samples made their way to the desk of George Otto Gey, a cancer researcher at Johns Hopkins. He noticed that unlike the other cell cultures that came into his lab, Lacks’ cells grew and multiplied instead of dying out. Lacks’ cells were “immortal,” meaning that because of a genetic defect, they were able to reproduce indefinitely as long as certain conditions were kept stable inside the lab.
Gey started shipping Lacks’ cells to other researchers across the globe, and scientists were thrilled to have an unlimited amount of sturdy human cells with which to experiment. Long after Lacks died of cervical cancer in 1951, her cells continued to multiply and scientists continued to use them to develop cancer treatments, to learn more about HIV/AIDS, to pioneer fertility treatments like in vitro fertilization, and to develop the polio vaccine. To this day, Lacks’ cells have saved an estimated 10 million lives, and her family is beginning to get the compensation and recognition that Henrietta deserved.
Dr. Gladys West
Andre West
Gladys West was a mathematician who helped invent something nearly everyone uses today. West started her career in the 1950s at the Naval Surface Warfare Center Dahlgren Division in Virginia, and took data from satellites to create a mathematical model of the Earth’s shape and gravitational field. This important work would lay the groundwork for the technology that would later become the Global Positioning System, or GPS. West’s work was not widely recognized until she was honored by the US Air Force in 2018.
Dr. Kizzmekia "Kizzy" Corbett
TIME Magazine
At just 35 years old, immunologist Kizzmekia “Kizzy” Corbett has already made history. A viral immunologist by training, Corbett studied coronaviruses at the National Institutes of Health (NIH) and researched possible vaccines for coronaviruses such as SARS (Severe Acute Respiratory Syndrome) and MERS (Middle East Respiratory Syndrome).
At the start of the COVID pandemic, Corbett and her team at the NIH partnered with pharmaceutical giant Moderna to develop an mRNA-based vaccine against the virus. Corbett’s previous work with mRNA and coronaviruses was vital in developing the vaccine, which became one of the first to be authorized for emergency use in the United States. The vaccine, along with others, is responsible for saving an estimated 14 million lives.On today’s episode of Making Sense of Science, I’m honored to be joined by Dr. Paul Song, a physician, oncologist, progressive activist and biotech chief medical officer. Through his company, NKGen Biotech, Dr. Song is leveraging the power of patients’ own immune systems by supercharging the body’s natural killer cells to make new treatments for Alzheimer’s and cancer.
Whereas other treatments for Alzheimer’s focus directly on reducing the build-up of proteins in the brain such as amyloid and tau in patients will mild cognitive impairment, NKGen is seeking to help patients that much of the rest of the medical community has written off as hopeless cases, those with late stage Alzheimer’s. And in small studies, NKGen has shown remarkable results, even improvement in the symptoms of people with these very progressed forms of Alzheimer’s, above and beyond slowing down the disease.
In the realm of cancer, Dr. Song is similarly setting his sights on another group of patients for whom treatment options are few and far between: people with solid tumors. Whereas some gradual progress has been made in treating blood cancers such as certain leukemias in past few decades, solid tumors have been even more of a challenge. But Dr. Song’s approach of using natural killer cells to treat solid tumors is promising. You may have heard of CAR-T, which uses genetic engineering to introduce cells into the body that have a particular function to help treat a disease. NKGen focuses on other means to enhance the 40 plus receptors of natural killer cells, making them more receptive and sensitive to picking out cancer cells.
Paul Y. Song, MD is currently CEO and Vice Chairman of NKGen Biotech. Dr. Song’s last clinical role was Asst. Professor at the Samuel Oschin Cancer Center at Cedars Sinai Medical Center.
Dr. Song served as the very first visiting fellow on healthcare policy in the California Department of Insurance in 2013. He is currently on the advisory board of the Pritzker School of Molecular Engineering at the University of Chicago and a board member of Mercy Corps, The Center for Health and Democracy, and Gideon’s Promise.
Dr. Song graduated with honors from the University of Chicago and received his MD from George Washington University. He completed his residency in radiation oncology at the University of Chicago where he served as Chief Resident and did a brachytherapy fellowship at the Institute Gustave Roussy in Villejuif, France. He was also awarded an ASTRO research fellowship in 1995 for his research in radiation inducible gene therapy.
With Dr. Song’s leadership, NKGen Biotech’s work on natural killer cells represents cutting-edge science leading to key findings and important pieces of the puzzle for treating two of humanity’s most intractable diseases.
Show links
- Paul Song LinkedIn
- NKGen Biotech on Twitter - @NKGenBiotech
- NKGen Website: https://nkgenbiotech.com/
- NKGen appoints Paul Song
- Patient Story: https://pix11.com/news/local-news/long-island/promising-new-treatment-for-advanced-alzheimers-patients/
- FDA Clearance: https://nkgenbiotech.com/nkgen-biotech-receives-ind-clearance-from-fda-for-snk02-allogeneic-natural-killer-cell-therapy-for-solid-tumors/Q3 earnings data: https://www.nasdaq.com/press-release/nkgen-biotech-inc.-reports-third-quarter-2023-financial-results-and-business