It really all began with that figurative tossing-out of the preconceived notion that I was going to wither away and that instead, I decided to leave an indelible mark on the world, loudly proclaiming to all that I would no longer succumb to stigma and be afraid to fight this disease; I was, in fact, summoning an army to rage alongside me.
As a part of this series, we had the pleasure to interview Sean Terwilliger.
Sean Terwilliger is a recognized Alzheimer’s advocate and public speaker who brings a perspective sorely missing from the conversation around dementia: that of someone living with the disease. Diagnosed with Early-Onset Alzheimer’s Disease in 2024 at the age of 60, he refused to let the diagnosis define his remaining years. Instead, he immersed himself in self-education, took control of his own medical journey, and became a powerful voice for others navigating the same path. He regularly addresses patient groups, families, caregivers, and, importantly, the medical professionals and students who diagnose and work with dementia patients. His debut book, ALZ Fired Up!: On the unstoppable nature of Early-Onset Alzheimer’s Disease and one man’s quest to outpace it, is a frank, deeply personal account of his two-year journey out of the darkness that followed his diagnosis. The book fills a critical gap in Alzheimer’s literature. Sean maintains a popular blog at www.ALZblog.net, where he shares ongoing insights, resources, and updates on his advocacy work and life. He is currently writing his second book, a novel. He is available for readings, discussions, advocacy events, educational programming, and personal consultations, and can be found online at alzfiredup.com.
Thank you so much for joining us in this interview series! Can you share the “backstory” of how you grew up?
I was born and raised in the Greenwich Village section of New York City, an upbringing I would not change for anything. As a youngster, I was exposed to nearly everything imaginable, whether it be culinary, literary, musical or societal. My parents were both college professors, so I was exposed to the importance of learning from an early age. I read, rather than watched TV, and by the time I was 4, I was already buying records whenever I was given a few dollars.
From an early age, I attended, with my parents, protest rallies and anti-war demonstrations, so I have been aware, for many years, about the power of the individual voice. I have met gurus, political leaders, eminent scholars, along with world class musicians and authors, many of whom were using their individual platforms to raise awareness of something or other. Advocacy, in some form or another, has always been a part of my life. In fact, my wife used to ask me why I questioned everything all the time. Ultimately, while not always making me popular, that has served me well in life.
When you were younger, was there a book that you read that inspired you to take action or changed your life? Can you share a story?
Not a book, per se, because I mainly read sci-fi and mystery books as a younger person. But all my life I was aware that in order for “the people” to get anything done, questions had to be asked, answers had to be demanded and the norms of society had to be continually assessed for validity in the current time. It was easy for me, when I was ready, to translate this attitude into my writing and activism.
What was the moment or series of events that made you decide to bring your message to the greater world? Can you share a story about that?
My Alzheimer’s diagnosis brought about the darkest moments of my life. I was faced with a disease that promised to strip the very essence of who I was. It was during this time that I was given the gift that would change everything. Storyworth is an online memoir generator, and I was given this project on the second day after diagnosis. I really enjoyed retelling my past and began to see the value of the process of writing. I was still having trouble telling people verbally–I had told my immediate friends and family, but that’s it. It was still too raw a process for me.
With that said, though, about three months into the Storyworth project I decided I wanted to try my hand at writing about what was happening in my life at the moment, rather than just focusing on telling stories about the past. I created The ALZBlog, and a giant hole in my psyche was sealed. I had found an outlet for my fear and rage that I tried to temper with some hope and joy. It took a while, and I needed some helping hands, but eventually hope and joy won out, and I live with very little (not none) fear and rage at all these days.
It really all began with that figurative tossing-out of the preconceived notion that I was going to wither away and that instead, I decided to leave an indelible mark on the world, loudly proclaiming to all that I would no longer succumb to stigma and be afraid to fight this disease; I was, in fact, summoning an army to rage alongside me.
As I started to get feedback on my blogging, I realized that my voice was a unique one. People living with dementia were not getting a seat at the table, often being passed over while discussions that pertained to us within the medical system were moving forward. Processes were being enacted; usually–but not always– by well-meaning individuals without the inclusion of those whose voices were most important. And I decided I wanted to change that.
As I got more into advocacy, I learned that I had people. And that these people were having (or supporting people who were having) the same issues I was. We had challenges communicating with physicians about our experiences, challenges with paying for care, and then once we received a diagnosis, we had to find our own path forward. My wife and I were in the worst mental states of our lives, and yet we were expected to navigate a complex system. We needed to fight. We needed to become warriors. We experienced the opposite of a patient-centric process, and I needed to try my best to ensure that no one else had to struggle the same way that I did.
What impact did you hope to make when you wrote this book?
My ultimate goal for my book is to help every newly diagnosed person, their caretakers and their diagnosing physician navigate this process and create a movement that leads to systemic change. I want doctors to read this book and try to understand the needs of their patients, I want families to read the book so that they can better manage the upcoming transitions and I want patients to know that they are not alone and there are things they can do, including treatments like LEQEMBI that slow the progression of the disease, to live what remains of their lives well and with joy and purpose, no matter how that plays out. I’d like my book to be required reading in neurology school. I’d like physicians, financial managers and therapists to have copies to give to people in crisis, and I’d like the world to know that a diagnosis is not an immediate death sentence.
My hope is that more people living with a dementia-related disease come out of their holes and rise up to combat the negative stigma that surrounds these diseases. There are many things that need to change, societally, in order for that to happen.
People living with dementia should feel empowered to raise their own voices to advocate for what they need–whether it be medical, political, societal or just in how they want to be treated or cared for by friends and family. We’re living in an age where it’s possible to live with Alzheimer’s disease, because the science has moved forward and treatments can slow the progression of disease. Gone must be the days of dismissal, avoidance and fear.
I liken my fight, in the book, to deciding to become a warrior. I’m designing a line of clothing to exemplify that using an image from the book cover of a brain with a Viking helmet.
Did the actual results align with your expectations? Can you explain?
The feedback from early readers and attendees of my book talks has been extremely positive. Many people have let me know that my writing, whether it be the book, or my blog, or hearing me speak has given them hope and the impetus to take action for themselves, like I did when I decided to pursue treatment with LEQEMBI when I was first diagnosed. I need to get the word out further. The movement is in its infancy, but I’ll be leading it as long as I’m able. So far, I’m extremely amped by the reaction.
What moment let you know that your book had started a movement? Please share a story.
I got an email from a reader who asked if she could call me in regards to her husband who had just been diagnosed with mixed dementia. I get emails like this fairly regularly, which implies that I am correct in the fact that people are desperate for practical information to care for themselves. There’s also a lot of mis- and disinformation out there and people don’t know where to turn. This person had heard about the new disease modifying therapies, including LEQEMBI, which is what my doctor and I had decided on, and she wanted to know what I thought. She wanted to know if I was scared when starting treatment, and what else I did to support my mental and physical health. Well, that’s all in the book, so I’m not going to spoil it. And I am happy to say her husband is undergoing treatment now. This is not the only example of something like this. In all these cases I advise people that it’s really OK to be devastated by this diagnosis, but it is not OK to live the remainder of their time in a devastated state.
I spoke at a pre-med program in Indiana at the request of a student who heard me on a panel. I talked of the need for the next generation of doctors, which included these young people, to regain their empathy and understand the holistic nature of healing. That holistic nature should include help and support, not just medication. They’ve invited me back this summer to keynote a gerontology conference.
Another person heard me speak at a session and invited me to speak at a large fundraiser. I’ve spoken and shared my story with pharmaceutical companies, politicians, senior centers, high-schools and colleges. To a number they all agree that something needs to change in the way the public perceives those of us with dementia and think that my words strike a good tone of harnessing hope by power.
These are the moments that make me realize that my words are resonating with people and that I need to continue my work.
What kinds of things did you hear right away from readers? What are the most frequent things you hear from readers about your book now? Are they the same? Different?
The thing I hear most is the people are excited by my fresh take on living with the disease. They appreciate my support for caregivers and my message about the state of healthcare in America resonates deeply. This has not changed over time. These are the things that people want to understand and to see better established, and / or changed within our society.
What is the most moving or fulfilling experience you’ve had as a result of writing this book? Can you share a story?
I think it’s been my work with young people. Unfortunately, people get set in their ways as they age, and that includes doctors and teachers. Young people are still open to having their minds changed or already have open minds about the way they want to do things.
I mentioned that I went to Indiana. While there, I was filled with so much hope for the future of medical care. To a number, these students were caring, empathetic and patient centered in their ideals. They reassured me that, if they could, they’d design practices that offered the necessary care protocols that offered not only complete and informative medical treatment, but also practical advice on how to help their patients best manage the next steps in their upcoming life’s journey. They recognized the impact that a dementia diagnosis had on the caregiver and wanted to create processes that encompassed their needs as well.
I also did my very first reading of my book there, and it was amazingly well received. My words resonated and I felt very empowered and knew that my book would hit the mark I was shooting for.
Prior to that, I spoke at a local high-school. After my talk, I was approached and thanked by several students who let me know that, in some way, they were also caregivers for someone–often without any training or even understanding of what the disease meant. I knew then, that this age-group was a profoundly underserved demographic. I intend to do more readings at schools, libraries and in places that young people will go–not just to senior living communities and the like.
Have you experienced anything negative? Do you feel there are drawbacks to writing a book that starts such colossal conversation and change?
There has not been a single negative reaction to the book. Certainly, some of my thoughts on life, death, religion and politics have raised some eyebrows, but even in this divided time, I’ve tried to present my ideals with compassion and understanding. Dementia knows no party, no faith and no ideology. We are all brothers and sisters in this fight. Nobody should think otherwise. The conversation across all these lines needs to happen, and if it takes dementia to make it so, then that’s what will be. It certainly took dementia to get me to climb onto my soapbox, and now I’m not getting off.
Can you articulate why you think books in particular have the power to create movements, revolutions, and true change?
Writing, in general, is an indelible art. When it is put out to the world, it becomes. For the most part, it is not subject (unless it is meant to be) to personal interpretation. It is a statement that can be re-assessed without change over time. As people progress, the writing stays the same, and what once resonated may not any longer… or it may resonate deeper with more knowledge gained. Writings can be read aloud or digested quietly alone. They can be consumed in one go, or over many sessions. They can be marked up and passed on. Writing in all forms is the key to successful activism, as long as it leads to the raising of voices. These days, thanks to the internet, the ability for people to write blogs and social media posts along with other forms of multi-media presentations has created the ability for all people to raise their voice. I had been doing this on the ALZBlog for some time, but felt the need for the permanence of a book. The book feels real in a way that only a tangible object can.
I’ve written a book for people who have, are diagnosing, or are caring for people who are undergoing massive life trauma. They have only the time they have available to them to read (or otherwise digest) and for some of them, a screen is an impediment. For some caregivers or doctors, they may only have time to sneak away for a moment to read a chapter. For someone with dementia, they may need to be read to. This is why I’m also producing an audio book version. And I’m going to read it. Mine is the only voice I want to hear on this project. (Although my wife will read some of her parts–she’s written a couple of key items in the book herself.)
What is the one habit you believe contributed the most to you becoming a great writer? (i.e. perseverance, discipline, play, craft study) Can you share a story or example?
I settled into the fact that my process for dealing with Alzheimer’s was going to be to become a griot, of sorts. I was going to be the teller of stories about living with the disease, warts and all. I was not going to set out to make myself look good. If I did look good, it would be because of my work and not because I embellished it. Therefore my habit had to be one of deep reflection and honest storytelling. I had, because of memory issues, to be faithful to a schedule. I had to take note of thoughts when I had them. Even with this in mind, far too many great ideas flitted away with the passage of time. I began to send myself text messages when I had an idea to write about, and I would translate these into a document that I kept open as I was writing.
About three quarters of the way through the process I enlisted a good friend to serve as editor, and she and I spent an hour a week talking about the book and ironing out details. As I neared completion, she and my wife spent hours going over the minute details of the writing, correcting little things, making suggestions on how better to express myself, and occasionally telling me to scrap entire sections. Accepting help in this was new for me, but it was invaluable in the long run. It really does take a village.
What challenge or failure did you learn the most from in your writing career? Can you share the lesson(s) that you learned?
The single hardest thing for me to do was stop. The book had to end, even though the science, disease, advocacy, ideas and knowledge didn’t. It was a huge challenge for me to decide what that point was going to be–ultimately it was organic and worked out really well, but in the three months between submission and publication I came across a multitude of things that I could have put–should have put in the book. Perhaps I’ll end up with a multi-volume set! The lesson to take from this is that a writer will never be able to get it all done. Times change, the world changes, life changes and fundamental knowledge changes far too quickly for that. Instead of obsessing on the things that you didn’t get in the book, think about the good things that you did, and make plans for the future. When documenting an issue as complex as this, you need to give yourself the grace to end, even if the issue is still morphing.
I also struggled with the publishing process. While, ultimately, I’m happy with the route that I chose, I did choose it out of necessity. My time left here on this planet is limited. I need to be here (mentally and physically) to support this book, and therefore I needed it out in the world quicker than the standard publishing world would have allowed. But I would have loved to have the power of a big publisher behind me. I’d love to see my book regularly stocked on bookstore shelves, rather than only available to order by those who know about it via word of mouth.
Many aspiring authors would love to make an impact similar to what you have done. What are the 5 things writers need to know if they want to spark a movement with a book? (please include a story or example for each)
1. You can’t just write a book and let it sit. You need to get out there to promote it, but to start a movement with it, you need to believe it. Dispense with the marketing. Be organic. Present thoughts and ideas. Calls for action. Rally people behind you and the book. My readings always include a robust q&a afterwards. It is essential to make people feel heard.
2. There needs to be a real need for a movement. Make sure your point is a valid one. Support it with facts. Offer solutions, not just griping. For example, when I point out the failures of the medical industry in America, I offer my thoughts on what could be done to make it better.
3. Make yourself available. You cannot start a movement while shuttering yourself off from the world. I share my email, phone number and webpages liberally. I show up and talk. I represent and I never hide. This is my life’s work, and I’m proud of it. You need to be too. No obfuscation. Own your thoughts and share them liberally.
4. Write openly and honestly. Write for the masses. Don’t bury your ideas in a haze of flowers. Be succinct and direct. If I want flowery writing, I’ll read a novel. If I want ideas I expect directness.
5. Never forget you’re speaking to human beings, and that they might not have the abilities you do. For example, many times while writing, I used direct thoughts such as “If you don’t like what your doctor says, get a new one.” before realizing that many people do not live in areas where they have that luxury. I tried, then, to also offer advice on how to connect with a reluctant doctor so that you, a patient with knowledge and ideas, could get the treatment you wanted.
The world, of course, needs progress in many areas. What movement do you hope someone (or you!) starts next? Can you explain why that is so important?
Oh my goodness. In this day and age, there’s so much to be said here. Really, though, I think it’s necessary to expand on what I’m presenting and take back our healthcare from the financed-based industry it has turned into. I’d love to see young doctors galvanized into an empathetic care-based system that holistically cares for patients. I’d love to see insurance companies cover treatments requested by doctors without requiring the intervention of prior-authorizations and the like. I’d love to see a methodology of getting more people onto “in-process” medications. Those that are not yet approved by the FDA but that are showing promise. There’s a program called “Expanded Access” that offers this sort of thing, but it is, often, cost prohibitive. There’s a drug I’d love to try but there’s no way I can afford it. There’s also a drug being developed in Cuba that shows great promise but, due to our embargos, is not even being considered here in the USA.
Finally, there is so much medical (and more) misinformation being spread on the internet and our 24 hour news stations. I’d love to see a movement of people demanding honesty from our news outlets and from our government. I’d love to see a movement educating people on ways they can best keep themself informed without succumbing to partisan (or religious) misinformation.
There’s enough real trouble in the world that we don’t need to keep creating lines of division. As I said, dementia is non-partisan. Access to medical care should be available to everybody across the board. We all need it.
How can our readers follow you on social media?
Facebook: https://www.facebook.com/sean.terwilliger/ Substack: https://alzblog.net BlueSky: https://bsky.app/profile/seanterwilliger.bsky.social Website: https://www.alzfiredup.com
Thank you so much for these insights. It was a true pleasure to do this with you.
Thanks for having me!
Sean Terwilliger of ALZ Fired Up! On How To Write A Book That Sparks A Movement was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.