I very explicitly try to make my reviews personal. I’m writing about what I think. How a book affects me. I’m not really trying to be an objective reviewer like the New York Times is. Not that I really believe they are all that objective. Still, there’s definitely a point-of-view difference (not to mention a difference in quality as well, they are much more erudite than I am).
This will be the most personal review I’ve ever written, although some later books may rival this.
Last month, when talking to my mother on the phone, her speech was extremely slurred. Now, she wasn’t drunk. She was very coherent. She has a drink of wine on occasion. And when I had dinner with her and my grandparents later, it turned out she was having some trouble chewing. She told me that the symptoms seemed to get worse as the day progressed. The doctors had given her some possibilities, and the one she related to us was fairly benign.
On April 5th, she informed me that her doctors has diagnosed her with amyotrophic lateral sclerosis, also known as A.L.S. and Lou Gehrig’s disease. This is the same condition that affects Stephen Hawking. Although I didn’t know much about the condition, I knew it was progressive, degenerative, and I vaguely knew it was usually fatal.
I broke down. This was probably the worst news I’ve received since I found out Christmas morning 2001 that my brother Matt had died in an accident en route to our massive family Christmas activities. I cried, and not a little bit.
I did a lot of reading on the A.L.S. Association’s web site. What I read wasn’t pleasant, despite their obvious efforts to try to impart hope. For one thing, they noted that the form of A.L.S. that first affects the speech centers (bulbar onset A.L.S.) is the fastest progressing form. And that nearly 50% of patients with A.L.S. are dead within 2 years of diagnosis. Obviously, not good news to take.
One thing on the A.L.S. web site was some book recommendations. The next day I ordered two of them, and received the first of these last Friday.
Despite also not giving a lot of hope despite obvious attempts to do so, Amyotrophic Lateral Sclerosis was very oddly comforting. This book puts together a lot of the information that is scattered over the web and in various places and publications from the A.L.S.A. Knowing what to expect has been calming. But not pretty. Not pretty at all.
There are three sections in the book. I’ve included the table of contents below. Section one covers the disease. What is it? What are the symptoms? What do we know about it? This is pretty much the same sort of thing you can find on the A.L.S.A. web site in their F.A.Q. But it’s done in a very readable and matter-of-fact fashion. The second chapter in this section covered how the diagnosis is made. This was nearly completely new to me. There are no tests to definitively find A.L.S. There are tests to rule out other diseases that have similar symptoms. Basically, A.L.S. can only be diagnosed by the symptoms, particularly its progressive nature and ruling out the alternatives.
The last chapter in the first section covered the treatments and progress toward finding a cure, including a long list of drugs that have been tried and clinical trials that have failed. And while that was depressing, the sheer number of attempts reassured me that there huge efforts to find anything to help are ongoing.
Section 2 covers the symptoms of A.L.S. in detail and the various methods for treating the symptoms. None of these treatments are cures. They are mostly in the nature of making life easier and finding workarounds to traditional functions that A.L.S. patients can no longer do like they used to. Things like what things doctors do to help those who can longer swallow. Things like what devices A.L.S. patients can use to communicate as their speech deteriorates. Things like what mobility devices exist. None of them pleasant. But again, to reiterate, I found just knowing these details very calming. I’ve always believed that getting thoughts down in black and white helps make sense of them. Their immensity becomes measurable. Similarly, the great scary unknown of A.L.S. at least has some boundaries.
The last section covers resources. One chapter introduces the A.L.S.A., another the A.L.S. division of the Muscular Dystrophy Association (the same folks that Jerry Lewis does a telethon for on Labor Day, though I didn’t know they also worked with A.L.S.), and one on dealing with insurance. I kind of skimmed the insurance chapter, though I suspect I might end up assisting my step-father with insurance companies later on.
Actually, although I vaguely knew about both muscular dystrophy and A.L.S. before this, I had kind of vaguely merged them in my head, despite knowing they probably weren’t the same thing.
My mother will be seeing a specialist for a second opinion. I am fervently crossing my fingers that they will tell her she has something far less serious that mimics A.L.S. in its early stages, but I’m not really holding too much hope for that. Unlike others, I’m generally a believer in medicine. This isn’t the sort of thing that doctors take lightly, so my mind is telling me my mother’s doctors probably checked pretty thoroughly.
Here’s the detailed table of contents:
- Section 1: Introduction
- What is Amyotrophic Lateral Sclerosis?
- The Diagnosis of ALS
- Clinical Trials and Finding New Drugs for ALS
- Section 2:Managing the Symptom of ALS
- A Multidisciplinary Approach to Care
- Quality of Life and Psychosocial Issues
- Treating the Symptoms of ALS
- Nutrition and Swallowing (Alycia Chu)
- Speech, Communication, and Computer Access (Amy Roman)
- Staying Mobile
- Breathing and Sleeping
- Thinking and Behavioral Changes (Susan Woolley Levime)
- Palliative Care
- Section 3: Resources
- Finding a Cure and Improving Living with ALS: How the ALS Association Helps Patients and Families (Mary Lyon)
- The Muscular Dystrophy Association (MDA), ALS Division (Ronald J. Schenkenberger)
- Negotiating the Insurance Maze (with Dorothy E. Northrop)
- Section 4: Appendix
- Resources
Title: Amyotrophic Lateral Sclerosis
Author: Robert G. Miller, Deborah Gelinas, Patricia O’Connor
Contributors: Susan Wolley Levine, Mary Lyon, Amy Roman, Ronald Schenkenberger, Dorothy E. Northrop
Publisher: Demos Medical Publishing
Format: Paperback
Publication date: 2005
Length: 246 p. (includes index)
ISBN-10: 1-932603-06-9
Subject: Amyotrophic lateral sclerosis — Popular works
LC classification: RC406.A24 M556 2005
