Below are the details of my nonfiction manuscript, Next-Generation Alzheimer's: Can We Reverse Our Inevitable? I look forward to hearing back from you: firstname.lastname@example.org
Title: Next-Generation Alzheimer’s: Can We Reverse the Inevitable?
Author: Katie Parsons
Projected length at completion: 50,000 words
Audience: Readers who have parents or grandparents with Alzheimer’s, particularly those who are desperate for preventative answers.
Summary: Alzheimer’s disease is the leading form of dementia and the 6th-leading cause of death of Americans -- more than breast cancer and prostate cancer deaths combined. Yet it is societally treated like a tragic symptom of aging, and not the killer that it actually is.
Preventative research, including brain scans of people with parents and grandparents with Alzheimer’s disease, are basically non-existent, with “diet and exercise” often listed as the main pieces of advice for keeping the disease at bay.
We have no real answers as to what triggers the disease, how soon it starts or if genetics truly play a role. Through personal narrative, interviews with loved ones of dementia patients and experts on treatment and prevention, alongside research on our knowledge gaps, this book will provide a comprehensive look at where my generation is today and attempt to answer the question: Is Alzheimer’s coming for me next?
Katie Parsons is a freelance journalist, featured in a combined 150+ places online and in-print, including USA Today, the Huffington Post and Scary Mommy. Before freelancing, she worked at major U.S. newspapers including the Chicago Tribune and the Orlando Sentinel. She is the creator of the parenting blog Mumbling Mommy which has 1,300+ posts.
Katie Parsons is also a podcaster, and social media and branding consultant who currently works on the Webby-nominated Champion’s Mojo podcast and with The Moving Picture Institute. Katie is an avid runner and swimmer and has completed two marathons and 12 half-marathons. She hopes to complete her first triathlon when the world is safe enough to do so. She is raising five children alongside her husband, Brant.
In 2019, Katie Parsons’ mother was officially diagnosed with moderate Alzheimer’s disease at the age of 65. The symptoms of the disease had been present for nearly a decade -- prompting the neurologist to give an early-onset diagnosis. In 2011, Katie’s maternal grandmother died at the age of 80, diagnosed with Alzheimer’s in her early 70s. As Katie began looking into preventative measures to protect her own brain, she was overwhelmed with the vast amount of information available -- and the inconsistency in messaging when it comes to the treatment and prevention of dementia. She was also disappointed in the lack of preventative screening tools for people like her, with a potential genetic predisposition to dementia, and the overarching “fix it when it breaks” mentality of brain health in America. She has determined to change that to equip the next generation (her generation) with the tools needed to ward off Alzheimer’s disease and other forms of dementia -- and eventually prevent them completely.
As a well-connected freelance journalist, Katie Parsons has a long list of platforms to share this upcoming book with -- and places she can do interviews for the book. Some of those are listed below:
There are currently no books written by a third-generation potential Alzheimer’s patients trying to find answers. There are many books giving suggestions for prevention and others that document what caregiving looks like (both narrative and informational). Here are some books that will certainly influence this one.
Written in the style of: Why We Can’t Sleep: Women’s New Midlife Crisis by Ada Calhoun
When Alzheimer’s knocks
The danger of denial
Lack of preventative care
The guilt, grief and shame of Alzheimer’s
Stress, middle age and dementia
Diet and exercise as a cure-all
Death by Alzheimer’s
Is Alzheimer’s coming for me?
Every morning I wake up, haunted by the same thought: How long do I have before Alzheimer’s disease comes for me, just like it did for my mother and grandmother?
I’m the potential third-generation Alzheimer’s carrier on my maternal side. I’m 38 and the mother of five children in a combined family. I run, a lot. I journal about gratitude. I hosted a daily podcast for 18 months that focused on a “positive start to each morning.” With the exception of cupcake leftovers on birthdays, I follow mainly a Mediterranean, low-carb diet. I even gave up caffeine for six months to further my quest to be as healthy as one human can possibly be. I haven’t been able to give up wine yet, but I limit it to antioxidant rich red wines (or so I tell myself).
I write for a living, dividing my time between freelance projects that help pay bills and ones that I’m passionate about, like raising awareness for fetal medicine or childhood cancer or, most recently, Alzheimer’s research. I live on Florida’s Space Coast, within walking distance to public beach access and try to catch four or five sunrises each week. I post about these bursts of sunlit color on Instagram with hashtags like #goodvibes and #newday. My husband is supportive of my career and hobbies (and I of him), splitting the domestic and kid duties with me since we both work more-than-full-time. My kids are adorable, traditionally “good” students, with no physical or intellectual disabilities. To have five perfectly healthy, normal children is like winning the Powerball -- figuratively and financially. A few years ago my husband asked me, “Do you want to try for one more kid?” to which I responded, “Let’s take the money and run.”
The careful cultivation of my life covers a deeper truth, however. In the midst of a work project or a gorgeous morning run or an especially explosive sunrise, panic grips me. I wonder when it will arrive, cloaked in a disguise of stress or normal aging. How many grandchildren will I meet and know before it’s too late? Can I afford the care it will take? When will Alzheimer’s come for me, too?
It’s been just over a year since my mom was diagnosed with moderate Alzheimer’s disease in March of 2019. She was 65 but the symptoms had been around for at least a decade prior. Her own mother was nearing severe Alzheimer’s when she died of congestive heart failure at the age of 80.
The Mini-Mental State Exam that measures severity of Alzheimer’s disease on a 30-point scale placed my mother at a 16. For reference, a 20 is considered mild dementia and a 12 is considered severe. As a result of her moderate diagnosis, she was placed on the highest tier of medication possible in the U.S. and her symptoms have improved over the past year, but the disease has not slowed.
My mother holds a master’s degree in criminal justice, has been married since the age of 18 to the same man and lives a comfortable Midwestern life along the shores of Lake Michigan. She never regularly smoked cigarettes or took drugs and on the rare occasion she drank champagne on New Year’s Eve, she would pass out before her first glass was empty. At the risk of flexing her privilege, she has done nothing to deserve the ravaging that her brain is undergoing at such a young age, when the rest of her body is poised to last comfortably for several more decades.
And yet. Here we are, without many answers and too far along in a disease we know so little about to buy her the years of cognitive and physical health that she deserves.
By the time loved ones discover that a parent or spouse is in the throes of Alzheimer’s or another form of dementia, it is a crisis situation. There is no time, money or energy to spend waxing philosophically about what could have prevented it, or splitting hairs over what signs should have alerted everyone sooner. When a neurologist looks you in the eye and tells you the diagnosis, you shift into “do” mode and away from “deep thoughts” mode. The cost of prescriptions, how to find outside help, attending support groups and generally making the patient feel more comfortable are the whole of life. Focus is so heavy on the patient that everyone else, including the children of the patient, live tertiary existences. People like me -- in the midst of raising our children, balancing our marriages and friendships and ramping up our careers -- are at risk of arriving in the same predicament as my mom eventually, but who has time to worry about it right now?
More than 5 million Americans live with Alzheimer’s and one in three seniors dies with Alzheimer’s or another type of dementia. A study from Rush University Medical Center predicts that by 2050, more than 13 million Americans will be living with Alzheimer’s or another form of dementia. The Mayo Clinic reports that about 5 to 6 percent of people with Alzheimer's disease develop symptoms before age 65. To put that in perspective, if 4 million Americans have Alzheimer's disease, around 200,000 to 240,000 people have the young-onset form of it, like my mother.
In its report 2018 Alzheimer's Disease Facts and Figures, the Alzheimer’s Association estimates that the lifetime cost of care for a person living with dementia is $341,840 – with 70 percent of this cost borne by families directly through out-of-pocket costs and the value of unpaid care. By 2050, the total cost of care for Alzheimer's disease in the United States is projected to increase to more than $1.1 trillion per year -- up from $277 billion in 2018.
The report points out that earlier diagnosis of Alzheimer’s can actually save money, both on the individual and governmental levels. Early diagnosis during the mild cognitive impairment stage of the disease would result in cost savings as much as $7.9 trillion over the lifetime of all patients.
So why am I not being asked about my own cognition at regular appointments? I have yet to attend a well checkup where the practitioner asks me if dementia runs in my family. The form that I fill out each time I visit asks me about a host of other issues, from family history of cancer to blood clots, but there is never a checkbox for dementia. Why does no one seem to care if dementia has happened in my bloodline, or if I have any outlying factors in my own life that could be contributing to a future diagnosis? Why does no one look at our brain until it's too late?
We ask women of a certain age to submit regularly to radiation of our breasts and ask men to agree to prostate exams -- but no one takes a preventative look at the brains of men and women, ever. Yet, more Americans die directly from Alzheimer’s disease than breast and prostate cancers combined, according to the Alzheimer’s Association. Treatment is not enough. We need prevention and earlier detection. I want this book to be that wakeup call for Americans.
The questions that I have about dementia are universal ones. Is it genetic? How much will it cost me? Can we prevent it completely? How do we know when it’s arrived? Will I know my grandchildren?
What can I do before it is too late?
I wished I’d known on Mother’s Day 2010 that in less than a decade, Alzheimer’s disease would change my relationship with my mom forever.
“That’s too much money. Let me pay,” my mom said, adjusting her glasses on the bridge of her nose to glance at the bill that the server had just set at our table for two.
“No, Mom, this is my treat. I want to pay for this. Please let me,” I replied, and I meant it. She glanced up from the bill to me and smiled, handing it across the table without another word.
“Happy Mother’s Day,” I said.
I was 27. My mom was 56. We were sitting in one of the fanciest seafood and mimosa brunch locations in downtown Chicago, enjoying a day that we were celebrating together as mothers for just the third time.
I had a job as a news researcher and archivist at the Chicago Tribune. I worked downtown and lived in Chicago’s Loop area with my daughter, who was two at the time. I was a single mom and had been since the day I found out that I was pregnant and her father opted out. To spend time with her granddaughter and to help me relieve the cost of big-city daycare, my mom had been taking a 90-minute train ride from her quiet town in Northwest Indiana on Friday mornings to spend the day with my daughter while I was at work. That single day of no daycare saved me hundreds of dollars each month — plus it was a good excuse for the two of them to hang out. My mom would stay until I got off work and then spend the night at my apartment.
Our three-generation girl gang would hang out on Saturdays – bundling up for the Windy City elements in the winter months to walk to a nearby museum or library. In the summer, we would stroll down Printer’s Row, arms bare, to find a good place for lunch.
After spending several years as a young woman living in Central Florida, being back so close to home was something I was enjoying thoroughly, especially since it meant my daughter could see her grandparents so often.
This particular Sunday of Mother’s Day I had asked my mom to stay all weekend. I was trying to get ahead on a work project so I put in some extra time on Saturday. Plus the idea of having my mom all to myself on a Mother’s Day morning was too fantastic to pass up. My dad said he’d manage alright on the other side of Lake Michigan while the moms spent some deserved time together.
I reached out to a babysitter I used occasionally who was happy to come spend the morning with my little one so the moms could have the one-on-one brunch time. I had budgeted enough for that babysitter and to take my mom to one of our favorite Chicago spots: Shaw’s Crab House. Of course there were plenty of Mother’s Day brunches to vie for my dollars but I’d been wanting to try Shaw’s famous Sunday morning brunch for months. This seemed like the right time and with the perfect person.
As hard as I tried to act like a normal Chicagoan most of the 18 months that I lived there — silently admiring the Chicago River from the Michigan Avenue bridge and suppressing squeals in the lobby of Tribune Tower each day when I arrived at work — on this day, my full-blown tourist zeal was out on display. We oooohed and aaaahed over the spread of lox, crab legs, omelette station fixins, and fruit upon fruit. We took a few trips back to the buffet line for more. We refilled our coffee several times.
A few times I looked across the table at my mom, delighted to be drinking coffee with her daughter at such a fancy place, and it felt really satisfying. After 20+ years of her serving as a parent to me — grounding me countless times for the clothing I refused to pick up from the floor, crying when she found birth control pills in my coat pocket when I was 16, waking me Sundays early to go to church and fulfilling her motherly obligation to be at every play, recital, award ceremony and more — at that brunch, we were peers. Two grown women, mothers, acting fancy and enjoying coffee together as they talked about life. It felt really good.
Upon paying that brunch bill, I felt that a shift in our relationship was cemented. Neither needed the other to flourish or thrive but we simply enjoyed spending time together and we loved our new shared experiences. We were colleagues in life now, all hierarchies thrown in the trash along with the crab leg shells stacked on our brunch plates.
Looking back now, I think that shift felt especially fulfilling because we had never been close when I grew up. She was a nurturing mother, to be sure, but we lacked the mother-daughter spark that seemed to draw so many of my friends and their mothers closer together. I had a friend in college who would hop on the dorm room phone with her mother every single day. She’d tell her mom about her classes, the meals she ate and even what drinking parties she planned to attend as an underage, 100-pound college girl. I was more intrigued than jealous overhearing these conversations. Could either of them move without the other knowing it? Could my friend order lunch or turn in an assignment or have a crush on a college boy without first running it by her mom?
A few months into my college career I had a startling revelation about my own relationship with my mom: not only did I not speak with her on a daily basis, but she never actually called me. At all. If we talked, it was because I dialed home to speak to her or my dad, or even my little brothers. Sometime in September 2000 during my freshman year at Ball State University, I decided I’d play a game of chicken with my mother -- one that she was not privy to. I would wait for her to call me, or send me a letter, or even an email, and see how long it took. Two months. It was nearly Thanksgiving when I called home to find out if I was invited back during my break. I was huffy on the phone. My mom was cheery and happy that I had called. She seemed oblivious to the fact that she had just won our “don’t blink first” game. She was just thrilled that I was going to be home for her favorite holiday.
Growing up, I didn’t talk to my mom about boys. I didn’t talk to her about sex. I didn’t tell her when I had a falling out with friends. My senior year of high school, I drove to a dress boutique after school one day and purchased a prom dress with money I’d made from a part-time job. Upon seeing it, my mom exclaimed “Why didn’t you tell me you were going? I wanted to help you pick that out!” I remember feeling surprised, and kind of bad, about it. She had never shown interest in those types of things before and it hadn’t even crossed my mind to ask her to come – or to pay for it. When I put it on to get ready for my senior prom, my mom took more pictures of me than I thought imaginable, later framing a large one and putting together an album of all the others. Maybe it was her own nostalgia but she cared more about that dress and that event than I’d ever seen her care before about anything I’d ever done. She never really told me why and I never asked her. In our dynamic, it wouldn’t make sense to talk about it.
Fast forward from senior prom 2000 to Mother’s Day 2010: Perhaps as my friends and their own mothers were growing apart, my mother and I were finally getting our chance at that connection. The timing was finally right.
Until it wasn’t.
In March of 2019, my mom was diagnosed with moderate Alzheimer’s disease. She was in the unmedicated throes of it for years leading up to that point, and on a steep decline for at least five years before that. The window of time that I thought was going to be decades-long on that Mother’s Day morning in 2010 was less than one.
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