Narcolepsy Book
Question:
Mrs. Utley’s book is GREAT! The reason I find it so compelling, is because she is not a doctor or an author – she is a Narcoleptic. When using technical terms, she works hard at making it understandable. I spent every minute thinking, "Exactly! That’s exactly what it’s like!" There is no specialist in the world that can accurately describe what it feels like to have Narcolepsy – it’s just not feasible, no matter how many years you have researched the subject! I had been diagnosed with Narcolepsy for over 10 years when this book came out (I live in Dallas & have met Mrs.Utley, so I ordered a copy from her right off) & I had never even HEARD of RLS or Myoclonus or PLMS. I was shocked to read her descriptions of it because that was one of the only "things" that I had just never been able to even TRY to explain … it just had to be me. A few months later I had to change Neurologists due to insurance and ended up having a sleep lab done (for the 1st time) revealing severe Myoclonus & RLS. Anyway, this is the only book (or article) that I have ever read that left me with the feeling that if someone (w/o Narcolepsy) read it, they might have some realistic insight into our world. My goal will continue to be trying to get my husband (or anyone other than my 9 yr old daughter that is already diagnosed w/ it) to care enough to read this book ….<fat chance>! And, just in case my opinion of the book was missed in all that … I give it a big thumbs up!!!! thx/rc Ramona Cadenhead {cadenhe…@aol.com}
Response:
Has anyone ever read the book entitled "Narcolepsy: A Funny Disorder That’s No Laughing Matter" written by Marguerite J. Utley? If so, please tell us how it is. If the author may be permitted, I would like to respond to your question. The book was reviewed by Allan I. Pack, MD, PhD, Dir, Ctr for Sleep & Respiratory Neurobiology; Dir, Div of Sleep & Chronobiology, Univ of Penn Med Ctr, Philadelphia, PA. He states, "The book is very well written… I would recommend that all patients with narcolepsy read the book… Moreover, sleep professionals will benefit from the insights into the disorder that Ms. Utley cogently provides." Edgar A. Lucas, PhD, ACP, Dir, Sleep Consultants, Ft. Worth, TX, states: This is the only book that gives a personal account on narcolepsy. It is candid, informative, and provides a personal perspective on the clinical features often described in the textbook. It is ‘must’ reading for every newly diagnosed patient with narcolepsy." Comments from readers include: "Thank you for writing this book. In my ongoing efforts to accept my narcolepsy, your book has been a big help in defining it as a set of real experiences. I’m certain I’ll refer to the book many times for the rest of my life, and will benefit from your positive perspective and advice." "I want everyone in my family to read it, as well as my doctors and any interested friends. Your book is so inspiring and affirming. It pretty well tells my own story in this battle with sleep." CONTENTS include: Chapter on each symptom, followed by my personal experiences with that symptom; Psychosocial Effects, Diagnosis, Treatment, Management of Symptoms, Narcolepsy in Children, Understanding Narcolepsy, Causes of Narcolepsy, Coping Skills, Support Groups, Benefits and Legal Matters, Sources of Information and Assistance. I am trying to place the book in public libraries so that information about narcolepsy will be readily available to the public. You can ask your library to order a copy or you can order directly from me. If you have any further questions, please e-mail be at mju…@aol.com.
Response:
Has anyone ever read the book entitled "Narcolepsy: A Funny Disorder That’s No Laughing Matter" written by Marguerite J. Utley? If so, please tell us how it is.
Response:
Utley’s is a decent book. She has narcolepsy, and according to the back cover, "a member of the Board of Trustees of Narcolepsy Network, Inc., a national volunteer organization, and serves as the Editor of their newsletter. She founded the Dallas Narc. Group and organized the first Texas State Convention." It’s paperback, 166 pp. A nice summary of diagnosis, symptoms, treatment, etc. I would have liked something more in-depth, but I like to read lots. It’s the only book I have found dedicated to narcolepsy. She published it herself. "Narcolepsy: A Funny Disorder That’s No Laughing Matter" Ms. Marguerite Jones Utley P.O. Box 1923 DeSoto, TX 75123-1923 $14 ($12 + $2. s/h). Another summary is by a respected physician. It’s 8 1/2" x 11", 16 pp. (The book, not the physician). Narcolepsy Primer, by Goswami and Thorpy Meeta Goswami, MPH, Ph.D. Director, Narcolepsy Institute Montefiore Medical Center 111 East 210th St Bronx, NY 10467 $6.00. Duane Harding weather doctor – Hide quoted text — Show quoted text -au…@torfree.net (Trevor Diseko) wrote: >Has anyone ever read the book entitled >"Narcolepsy: A Funny Disorder That’s No Laughing Matter" >written by Marguerite J. Utley? If so, please tell us how it is.
