The Unprofessional Guide to frontotemporal dementia and/or amyotrophic lateral sclerosis

It’s decent, but I wished it went deeper in places. Chapter 1 was very grounding when I was still in shock, and I appreciated that it didn’t try to sell me a miracle. That said, I found some of the later chapters a bit too general for my situation. Still, worth reading if you’re new to this.

As a caregiver for my husband, I’ve been drowning in medical jargon for months. This book finally put things in plain English. The symptom table and the chapter on caregiving without burning out honestly made me feel less alone. It’s not fluffy or falsely cheerful — it’s just real. I’ve already recommended it to my sister.

I bought this the day after my diagnosis and read Chapter 1 three times. It was like having a friend sit next to me and explain things without panic. The doctor had rushed through everything, and this guide filled in the gaps. I docked a star because it’s not super detailed in some areas, but honestly, that’s probably good for my anxiety. It’s a solid starting point.

This guide saved me during the darkest week of my life. When I got my FTD diagnosis, I couldn’t focus on anything — every medical page I opened made me feel worse. This book spoke to me like a human being. It explained what was happening in my brain, what I could expect, and gave me questions to ask my neurologist. I actually felt calmer after reading it. I can’t thank the author enough.

This is a really helpful resource for families. I’m still processing my mom’s ALS and FTD diagnosis, and this helped me get out of my own head and into practical mode. The chapter on what to expect, and the one for caregivers, were especially useful. It’s not a clinical manual — it’s more like a wise friend who knows what they’re talking about. Definitely recommend it.