The Unprofessional Guide to autosomal dominant cerebellar ataxia, deafness and narcolepsy

I read this in one sitting the night after my diagnosis. I was crying and shaking, and this book felt like a friend sitting on my bed with me, holding my hand. It explained the words my doctor threw at me without once making me feel stupid. I finally understand what is happening to my body — and I don't feel so alone anymore. Thank you for writing the book I didn't even know I was desperate to read.

Good book overall. The first chapter was exactly what I needed — clear and gentle. I docked one star because I wish Chapter 1 had gone a little deeper into the genetic mechanism, but I suspect the next chapters cover that (I'm halfway through). Also, a few more diagrams would help visual people like me. But the tone is spot on, and I've already recommended it to my sister who's also a carrier.

I got this for my dad who was diagnosed last month. It's helpful, definitely, and the plain language is nice. But I was hoping for more specific medical names and gene details — it feels a bit general at times. Chapter 3's symptom table was useful, but I found myself writing 'ask doctor about this' in the margins a lot. It's a good starting point, but not as in-depth as I expected for a 'guide.'

As a caregiver, I appreciated the warm tone, but I felt Chapter 1 was a bit repetitive about the same three symptoms (obviously, ataxia-deafness-narcolepsy are the name). I get it: it's a triple whammy. The explanations of the cerebellum and the gene were understandable, though. I'll keep reading because it does calm the panic, but it's not the most 'information-dense' thing I've read.

The subtitle says 'A Plain-Language Guide' and it delivers. I'm 68, recently diagnosed, and I have zero medical background. This book explained the whole mess in language I actually understood. It didn't try to cheer me up with false hope, but it also didn't leave me feeling doomed. It just gave me facts and practical tips. Chapter 1 alone was worth the price. Highly recommend to anyone in my shoes.

I bought this for my husband and read it aloud to him on the drive home from the neurologist. We both felt like a weight was lifted. The author has a way of saying 'this is what's happening' without it feeling like a death sentence. It's honest, it's warm, and it feels like someone is finally speaking to us directly, not at us. I've already told my support group to buy it.

Really well written and the tone is surprisingly funny for the subject matter — quirky but appropriate. I wish it had more real-life stories from actual patients in Chapter 1, but the science explanations were top notch for a layperson like me. The section about what happens in the body was the first time I ever actually got it. A great companion to bring to your doctor's appointments.