V2.04: Back to Indiana (among other things)
The very first thing I’m going to post, because it’s still making me feel all warm and fuzzy inside, is this unsolicited review from a blog reader, whose name I will blank out, unless he tells me he’s OK with me sharing it. But he’s real! Here it is:
ALZ Fired Up!: On the Unstoppable Nature of Early-Onset Alzheimer’s Disease and One Man’s Quest to Outpace It by Sean Terwilliger, Palmetto Publishing, July 2026. ISBN numbers: Hardcover: 9798318843334; Paperback: 9798318843341; eBook: 9798318843358
In over 3 decades of struggling to understand dementia, it is the voices of those actually dealing with this often devastating diagnosis that have impressed me the most. Sean Terwilliger’s remarkable book will be a prominent recommendation in that category for the foreseeable future.
Published a mere 24 months after receiving the diagnosis of Alzheimer’s disease, Terwilliger’s searingly honest account of his personal struggle to come to grips with that reality will be instructive for anyone in that situation as well as those who care about them.
I suspect few if any readers will imitate the specifics of the author’s journey, but I am confident every reader will find insights that can assist them forging their own path. Terwilliger wisely acknowledges that each person living with dementia will need to discern with their care partners what works for them, even while identifying some of the common challenges that all of them will face.
Dealing with the shock of getting the diagnosis and struggling to imagine what it will mean for you and your loved ones is one such challenge. Both Sean and his wife Wendy are quite candid in acknowledging how difficult they found it to deal with the diagnosis, reminding all to expect a lot of emotional pain and turmoil.
A third of the way through the book, he opines “I’ve learned that it’s okay to be devastated, but it’s not OK to live devastated.” [Bold in original.] Healthy advice for anyone living with any chronic or fatal illness.
Terwilliger acknowledges that there is no easy way to share the news of a terminal diagnosis, still he has suggestions for healthcare professionals who face this task. More importantly he urges all who receive such a diagnosis to intentionally build their support team, since he recognizes how much his wife’s support has meant to his own journey.
Soon after being diagnosed, Terwilliger decided to start a blog documenting his response. You can access the blog at alzblog@substack.com and it is often quoted in the course of this book.
Long before Sean received his diagnosis of Alzheimer’s, Wendy had been diagnosed with a chronic and usually fatal liver disease. The lessons she learned in responding to that diagnosis have served them well, and several are shared in this book.
That healthcare in America is more about profit than patient care is unlikely to surprise any readers. A corollary is that patients must advocate for their own care, and that includes changing Doctors if they are not meeting your needs.
The fact that clerks in insurance companies often have more control over treatment than the judgement of medical professionals is another experience that will be common to most of us. The advice to be prepared to fight for the treatment you deserve is again appropriate here.
Terwilliger clearly values the decision he made early on to contact the Alzheimer’s Association Help Line. He includes the number because he believes we should all have it, which works as a reason to include it here: 1-800.272-3900.
As part of his self-advocacy, Terwilliger has immersed himself in learning everything he can about the state of research and treatment for Alzheimer’s. Every chapter has numerous endnotes, and for some readers these pointers to current research will be one of the main ways they profit from this book.
For others simply being exposed to Terwilliger’s almost frantic response to Alzheimer’s will motivate them to be more engaged in their own self advocacy.
The author mentions that he has become a Dementia Champion and thus can offer the one hour information sessions that enable folks to become Dementia Friends. This book provides specific examples of each of the 5 key messages that can be useful to those of us providing these sessions.
None is more powerful than the realization by both Sean and Wendy that he is a better person as a result of living with Alzheimer’s, and that since his diagnosis he has experienced a depth of joy and purpose that continues to enrich their lives.
I suspect relatively few readers will follow Terwilliger in his exploration of the options available for legally pursuing death by choice, but all will benefit from careful consideration of the complex issues involved and few would explore those considerations on our own..
I could offer additional ways readers are likely to benefit from this book, e.g. the advice to prepare a Durable Power of Attorney, a Living Will, and an irrevocable trust for your home. Terwilliger recognizes the importance of clinical trials and advocates participating in them whenever possible
However I hope the examples given above are sufficient to motivate you to buy this book, ponder it carefully, and share your reactions with others. The book is available from Amazon, Barnes and Noble, and your local bookseller.
Honestly, I’m flabbergasted by the nuance of this. I can’t tell you how happy I am! I am, though, still looking for more reviews, both long form, like the above–I’d like to be able to put some real reader opinions on the alzfiredup.com website–and on the customer review section for the book on Amazon. All of that would be really helpful for me and enable the much needed spread of this work out towards the mainstream. Thanks! In advance. I also really want to know what y’all think.
There’s also this little thing happening in Indiana next week that you can sign up to watch, should you be so inclined. Here’s the promo:
Live longer, healthier and happier! The annual Mid-America Institute on Aging and Wellness has something for everyone, whether you are a retiree, family caregiver, student or healthcare professional.
Unable to attend in person? We have a virtual option for the three keynote presentations!
Register now at https://usi.edu/maia
Also, part one of my talk with Lisa Marshall, on her Don’t Be A Miserable Cow podcast is live. It was a great talk. Lisa’s great. She lost her husband to Alzheimer’s some years ago and has subsequently found her way to a joyous existence, and helps spread some very good messages. She’s got a couple of books out too. Give her a subscribe on the Youtube. She’s got some great stuff (besides me) on there. Hopefully she’ll be releasing part two in the not too distant future.
You can find our chat here: Choosing Purpose After an Alzheimer’s Diagnosis
I’ve got a talk coming up in Vinalhaven Maine in a few weeks. This is a tag-team deal with the Alzheimer’s Association’s Maine chapter. Be advised, if you are planning to come, it ends after the last ferry back to the mainland, so you’ll have to book accommodations. There are, indeed, worse places to spend a night though! Here’s the flyer for that:
I took another blood test a few days ago, which confirmed the results of the last one. I seem to be in some sort of remission, which is a really good thing. It’s not going to slow down any of my efforts to eradicate the disease and fix the nation’s healthcare system. I still have Alzheimer’s and until there’s a cure, I won’t rest. Neither should you. Get on the horn with your congresspeople. Sign up at the Alzheimer’s Associations AlzImpact site or the US Against Alzheimer’s Action Page. Every little bit helps. Both of these sites will help you contact your state and federal representatives and senators to urge them to continue to fund research, pass bills and stay strong in the fight to End Alzheimer’s.
Until next time,
Thanks for reading
Sean