A second read of Losing My Mind: An Intimate Look at Life with Alzheimer’s Disease

While enjoying the July 4^th holiday on the Oregon Coast with my family this weekend, I reread Thomas DeBaggio’s memoir of his early-onset Alzheimer’s disease. It was published in 2000, two years after his diagnosis at age 57. 

I first read Losing My Mind in 2014. I had very mild cognitive impairment, but I knew I was likely on the Alzheimer’s trajectory due to my loss of smell and two copies of the APOE-4 allele. I only gave it three stars on Goodreads at the time. I had almost forgotten about it when recently I was exchanging emails with Professor Andrew Lees, a renowned British expert on Parkinson’s disease and other neurodegenerative disorders. He had written a very thorough review of my book A Tattoo on my Brain: A Neurologist’s Personal Battle against Alzheimer’s Disease for the British journal Brain last summer. (Unfortunately, I believe the book review is still hidden behind a paywall for those who do not have institutional access.)  During our conversations, Prof. Lees asked me which are my favorite Alzheimer’s pathographies. I must admit that I had never heard the word before, but it does indeed exist.  According to the OED it is defined as “the study of the life of an individual or the history of a community with regard to the influence of a particular disease or disorder,” essentially a memoir about life with a certain disease. I mentioned Greg O’Brien’s On Pluto: Inside the Mind of Alzheimer’s Disease and Wendy Mitchell’s Somebody I Used to Know: A Memoir, but I omitted DeBaggio’s book. Why did I give it only three stars eight years ago? I think I found the frenetic structure hard to follow, switching from old memories of childhood to current issues with his own cognitive problems to segments about new understanding and advances in Alzheimer’s as of 1999. This time I could relate to most everything he described. I was entranced and read it in a single day. The jumbled organization that annoyed me before now seemed to set the tone of what Alzheimer’s is really like, not being able to stay on track for more than a few minutes at a time. The hopeful Alzheimer’s science as of 1999 was already out of date by 2014. But now it sadly reflects the frustration in our failure to find a cure for Alzheimer’s. Reading Losing My Mind now in 2022, when I have mild dementia from Alzheimer’s disease confirmed by PET scans, it is definitely a five-star read.

Here are three quotes from Losing My Mind that really resonate with me:

“As soon as I put down a hat or shirt in an unusual place, it becomes ‘lost.’ Half my life now seems to be spent looking for things. It often seems that Alzheimer’s is making all kinds of things disappear.” – page 124

“My intention in both this book and the radio interviews is to break through the sense of shame and silence that Alzheimer’s has engendered. I want people with the disease to come forward, unafraid of exposing their illness, and tell the world what it is like. Doctors and advocates can help, but there is nothing like personal stories to humanize the silent, destructive power of this illness. The more we talk about it and expose Alzheimer’s, the greater the chance a cure will be found quickly.” – page 141

“My mind is becoming one-dimensional. I have almost lost my ability to hold two thoughts simultaneously. Along with this is the long frustrating wait for the word I need in conversation.” – page 142

Thomas DeBaggio died on February 21, 2011 at age 69, 12 years after his diagnosis.