Wednesday, August 25, 2010

My MS/Disability Library

English: The main reading romm of Graz Univers...
(Photo credit: Wikipedia)
I'm not a voracious reader, but I am a steady one. I always have a book going.

In the nine years since my diagnosis I've read a number of books about MS and other disability issues. Below is a list. I didn’t comment on each book in the list. Frankly, I can't remember the content of most of them. This bothers me. The section of my brain in charge of remembering the contents of books or movies doesn't work very well. Same deal with the section that is supposed to remember people's names, or a funny joke. I don't know if this is an MS (multiple sclerosis) or an M.S. (Mitchell Sturgeon) thing, but it's definitely a thing.

Please email me titles, along with your impressions, of other MS or disability related books. Click on my email icon on the top right-hand side of my blog. I'll summarize these in a future post.

Here’s my list:
Waist-High in the World, A Life Among the Nondisabled
Nancy Mairs 1996
Although this book was written well before I even knew what MS was, the story still rings true. It's a memoir, describing the author's journey from the time of diagnosis until the onset of significant disability. Although things were different in medical terms 10 or 15 years ago, the manner in which Ms. Mairs has dealt with the disease shows timeless strength and courage.
Cover of Fall Down Laughing: How Squiggy Caught Multiple Sclerosis and Didn't Tell Nobody
David L. Lander 2000
This is the first of several books on my list of the celebrity memoir type. Strangely, the writing quality of these non-writers is usually pretty good. I suspect heavy editing. Only Montel Williams admits to having a co-writer (see below). Their story isn't in-and-of-itself any more compelling than mine or yours. Yet, let's face it, it's more interesting to read about celebrity experiences than it is to read about Average Joe experiences, all else being equal. We are a society that loves our celebrities.
The only interesting point I remember about this book is how strongly David Lander felt that he needed to conceal his disease in order to survive in the acting profession. Unfortunately, he may have waited too long, as people started making assumptions to explain his poor walking (they thought he was a drunk).
Alternative Medicine and Multiple Sclerosis
Alan C Bowling 2001
This book was given to me by my neurologist, who has been consistent from the beginning in admitting that he has very few weapons with which to combat my primary progressive multiple sclerosis. I found this book to be well-written and well researched, but frankly I'm just not an alternative treatment kind of guy (says the guy who just had CCSVI treatment).
Meeting the Challenge of Progressive Multiple Sclerosis
Patricia K. Coyle, June Halper 2001

Multiple Sclerosis, Current Status And Strategies for the Future
Janet E. Joy, Richard B. Johnston, editors 2001
This virtual encyclopedia of all things MS came out of the Institute of Medicine, via the National Academies Press. Unfortunately, so many things have changed since 2001 that this book has become out of date. Hopefully an updated edition is in the works. Frankly though, things are changing so fast in the MS world these days, I don't know if a comprehensive book can ever be published without finding itself almost immediately obsolete. This is a good thing. The lack of change that we used to see in the MS world wasn't working for us.
When the Road Turns, Inspirational Stories by and About People with MS
Margot Russell 2001

The Art of Getting Well, A Five-Step Plan for Maximizing Health When You Have a Chronic Illness
David Spero 2002

Lucky Man: A Memoir
Michael J. Fox 2002
This is the first of Michael J. Fox's two memoirs. His life certainly makes a compelling story, Parkinson's disease and all. I've often said that the MS community needs a Michael J. Fox – a big-time celebrity activist for his or her disease. Maybe Julia Roberts or George Clooney. I would accept any member of the cast of Seinfeld, but they are getting a little old for an MS diagnosis. 
Multiple Sclerosis, A New Journey
Richard C. Senelick 2003

When Walking Fails, Mobility Problems Of Adults with Chronic Conditions
Lisa I. Iezzoni 2003

Cover of Climbing Higher
Montel Williams with Lawrence Grobel 2004

Blindsided, Lifting a Life Above Illness, A Reluctant Memoir
Richard M. Cohen 2004
Richard Cohen, a well known journalist in his own right, is the husband of TV personality Meredith Vieira. Not only has he fought multiple sclerosis, but also two bouts with cancer. This book is an excellent read.
Curing MS, How Science Is Solving the Mysteries of Multiple Sclerosis
Cover of Howard L. Weiner 2004
I hate the title of this book. Maybe from the perspective of a big-shot doctor who has dedicated his life to unraveling the mysteries of multiple sclerosis, it was time to write a book. However, from the perspective of a long-suffering multiple sclerosis patient who has received zero benefit to date from the medical community (unless my CCSVI treatment worked), I just don't see it. This is a good read for MS historians (if such a thing exists), or for fans of Dr. Weiner (if such a thing exists). Excuse me if I'm a little sour about Dr. Weiner, but he is publicly trashed my favorite MS theory, CCSVI, so I don't have much use for him right now.

Cover of Barrier Free Travel, A Nuts and Bolts Guide for Wheelers and Slow Walkers, Second Edition
Candy Harrington 2005
Candy is a wonderful disability travel writer. She also publishes a quarterly magazine called Emerging Horizons, and maintains a blog called Barrier Free Travels.

Yoga and Multiple Sclerosis, A Journey to Health and Healing
Loren M. Fishman, Eric L. Small 2007
This book does a decent job of presenting a variety of yoga poses that readers can choose from depending on their level of disability. After reading this book I practiced a few of the poses daily, for a number of weeks. I guess I'm just not a yoga guy, because it's been quite a while since I've practiced any of these poses.
Multiple Sclerosis, Your Legal Rights. Third edition
Lanny Perkins, Sara Perkins 2008
This is a must-read for all MS patients, addressing issues such as: insurance, debt, disability, taxes, family law, discrimination, etc. 
Living with Progressive Multiple Sclerosis, Overcoming the Challenges, Second Edition
Patricia Coyle 2008
This was given to me by one of my favorite physical therapists, Judy Sweeney. You can read about Judy here.
101 Accessible Vacations, Travel Ideas For Wheelers And Slow Walkers
Candy Harrington 2008
It was because of this book that my wife and I enjoyed an incredible Caribbean vacation in April of this year.
Always Looking Up, The Adventures of an Incurable Optimist
Michael J. Fox 2009
This is Fox's second memoir – probably not as compelling as the first, but I did manage to get through it and was happy that I did.
Primary Progressive Multiple Sclerosis, What You Need to Know
Nancy Holland, Jack Burks, Diana Schneider 2010

Multiple Sclerosis Manifesto, Action to Take, Principles to Live by
Julie Stachowiak, 2010
I am currently reading this book. My friend, the Wheelchair Kamikaze, recommends it. 

I’ve also borrowed a book or two from the local library. Here are a couple titles that I recall:

As for Tomorrow, I Cannot Say: 33 Years with Multiple Sclerosis
Diana Neutze, 2002
The style of writing and level of intellect of this author is very similar to Nancy Mairs, the first author in this list. If you like one, I think you'll like the other. I do. Ms. Neutze still maintains a blog called Living with multiple sclerosis.

Caddy for Life: The Bruce Edwards Story
John Feinstein, 2005
In the strictest sense this is not a disability story. It is certainly not an MS story. It's an accounting of the graceful passing of well-known golf caddy Bruce Edwards, from ALS. If you're a golf fan, this is a heart wrenching story and a must-read.
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