MS Book Review: The First Year—Multiple Sclerosis: An Essential Guide for the Newly Diagnosed
I picked this one up soon after I was diagnosed (that was in 2013), so it’s not a new book. In fact, it’s fairly old. Published in 2007, it’s in its second edition, updating a version which first appeared in 2003.
Sometimes, we are compelled to read the latest work on a topic as ever-changing as MS. It makes sense, considering how quickly research is uncovering new knowledge and pharmaceutical companies are developing new therapies.
In this case, however, I think this book stands on perennial qualities that are worth reviewing for anyone who is newly diagnosed with MS.
About Multiple Sclerosis (The First Year® series)
Right away, I was drawn into the format of the book. The series (with titles for other chronic illnesses, such as fibromyalgia, IBS, and lupus) creates a timeline for the newly diagnosed to follow.
The first section covers days 1 through 7. At the “first-week milestone,” the timeline extends to weeks 2, 3 and 4. At the “first-month milestone,” it works its way to mid-year by way of months 2, 3, 4, 5 and 6. Finally, the “half-year milestone” follows through from months 7 through 12.
If you’ve had MS for a while, you probably still remember the harrowing life alterations that occurred during that first year, and author Margaret Blackstone is fairly comprehensive in covering all of the relevant topics.
Two different perspectives
In addition, these chapters include two different perspectives.
“Living” combines descriptions of “what to expect” as well as the author’s first-hand observations.
“Learning” takes those observations a step further by delivering fairly solid medical information (let’s face it, a lot has happened since 2007 in the field of MS research, so if this book has any holes, this is the chief reason for them).
In both the “Living” and “Learning” perspectives, they end with an “in a sentence” summary which reminds me of the summaries used in 12-step program manuals: timeless words of wisdom. As with addiction recovery principles, the direction this book offers can be revisited and reapplied, should you lose your way while living with MS.
Living with MS is a work in progress
I am reminded of a friend who was diagnosed with MS nearly 20 years ago. In my third year post-diagnosis, I made an offhand comment about “getting used to this crazy disease,” and she countered, “I still haven’t gotten used to it.” I realized then that living with MS is a work in progress. We need guides— this book, as an example— to keep us charting a healthy course.
About the author
Author Margaret Blackstone is the book’s “patient-expert.” She was diagnosed in 2000 after a dangerous fall resulted in a head injury. Her diagnosis came literally within a week. This book is the culmination of both her dogged research and lived personal experience.
Of her intent to write the book, she wrote: “I decided from the very beginning to be the best sleuth I could be in a discovering the clues that would lead me to the best doctors, the right treatment, and as many positive outcomes on this journey as possible.”
About Dr. Saud A. Sadiq
Dr. Sadiq, Blackstone’s physician, authored the book’s foreword. He wrote: “When I first told Meg of her diagnosis, I could see that her bewilderment and uncertainty about her future were blotting out almost everything else I told her that day.”
At the time, he was unable to direct her to resources to guide her through the transition that a chronic illness diagnosis necessitates. Finally, she wrote this book.
His response? “This outstanding book is an answer to her many questions about MS and much more. It is intended to be used by a patient from the day that he or she is diagnosed and will help enormously in getting the patient back on an even keel.”
Strengths of this book
I greatly appreciated the focus on both the lived and learned approaches to the relevant topics addressed in the book.
So much of what people with MS need is not medical information, but practical tips for dealing with less clinical aspects of living with chronic illness, such as navigating the healthcare system, dealing with “snake oil” advice, and accepting the emotional realities of the disease.
We are not our disease, but human beings who’ve been dealt what Blackstone calls a “quest,” mostly because MS is still such a mystery. This quest, she aptly points out, isn’t just a clinical footnote to intellectualize, but a life-altering path offering choices we can make to optimize living with MS.
Shortcomings in this book
The book’s age makes some of the more clinical discussions less relevant, as several new treatments for disease progression and symptoms and new ideas about root cause have blossomed since 2007.
Regardless these shortcomings, you will find this to be a great guidebook for dealing with MS. Rapid change in neurological research and science is hard to keep updated, but the challenges for a new MS patient remain the same: understanding the diagnosis, then finding ways to come to terms with it and moving forward in life.
Blackstone’s effort is positive and empowering. I would still recommend this book to anyone who is facing down a new MS diagnosis.
Do you celebrate your MS Anniversary?