Curating an MS Library: Must-Reads for Anyone Living With Multiple Sclerosis
Call me old-fashioned, but I don’t have a smart phone. Hell, I don’t even have a mobile phone. We don’t have a television, we just bought a car after five years auto-free, we forage for wild food as a hobby, and I like the feel of a real book in my hands.
Hmmm, perhaps I am a bit old-fashioned … except for the real books bit. Real books are as appropriate and important in the online age as ever.
To that, we thought it might be an interesting exercise to explore the idea of a multiple sclerosis (MS) library you might want to begin collecting for general knowledge, reference, and lending.
Sure, there are electronic versions of almost all of these books. E-books have important features —adjustable print size, and changeable background lighting — which can be helpful for people with MS-related vision issues. There is something, however, to having a shelf (or box) of books which can remind you that you had been meeting to check something or relearn a lesson in their pages.
There are books of disease basics recommended to me early in my diagnosis to which I nearly never return at this latter stage in my disease. There are, however, some which I got early on which are dog-eared and worn from use by me and others.
Of course, books that have been invaluable to you in your life with MS may not have the same effect on others. Books are personal experiences. Don’t be offended if the borrower returns it without high praise. Now, on to the books.
First, it’s important to know that you needn’t have your own library. In America, the MSAA’s lending library offers a vast array of books and DVDs which are helpful for 45-day loans. It’s a good way to check to see if a particular book is worth investment and space.
There are many categories of books which might help at different times in the course of the disease and for specific topics.
Disease basics and clinical information
- A History of MS by Colin L. Talley
- The First Year: Multiple Sclerosis: An Essential Guide for the Newly Diagnosed by Margaret Blackstone and Saud A. Sadiq, M.D.
- Curing MS: How Science Is Solving Mysteries of Multiple Sclerosis by Howard L. Weiner, M.D.
- Multiple Sclerosis for Dummies by Rosalind Kalb, Barbara Giesser, Kathleen Costello
- Multiple Sclerosis: The Essential Guide by Leonie Martin
- What Nurses Know … Multiple Sclerosis by Carol Saunders
- Coping with Multiple Sclerosis by Cynthia Benz
Diet, exercise, and healthy lifestyle books
New diet and exercise, healthy lifestyle, and symptom management books come on the market every season. Some of the titles I have found helpful over the years include:
- MS Complementary and Alternative Medicine and Multiple Sclerosis by Allen C. Bowling, M.D., Ph.D.
- Managing MS Naturally by Judy Graham
- Yoga and Multiple Sclerosis: A Journey to Health and Healing by Lauren M. Fishman, M.D. and Eric Small
- Dietary Supplements and Multiple Sclerosis: A Health Professional’s Guide by Allen C. Bowling, M.D., Ph.D.
- MS and Your Feelings: Handling the Ups and Downs of Multiple Sclerosis by Allison Shadday, L.C.S.W.
- Overcoming Multiple Sclerosis: An Evidence-Based Guide to Recovery by George Jelinek, M.D.
- Cooking Well: Multiple Sclerosis: Over 75 Easy and Delicious Recipes for Nutritional Healing by Marie-Annick Courtier and Vincent F. Macaluso, M.D.
- Mental Sharpening Stones: Manage the Cognitive Challenges of Multiple Sclerosis by Jeffrey N. Gingold
- The Can Do Multiple Sclerosis Guide to Lifestyle Empowerment by Patricia Kennedy, R.N, C.N.P., M.S.C.N.
- Minding My Mitochondria by Terry Wahls, M.D.
Sometimes you just want to read someone else’s story of how they cope with our shared disease:
- Blindsided: Lifting a Life Above Illness -- A Reluctant Memoir by Richard M. Cohen
- Fall Down Laughing: How Squiggy Caught Multiple Sclerosis and Didn't Tell Nobody by David L. Lander
- Chef Interrupted: Discovering Life’s Second Course with Multiple Sclerosis in Ireland by Trevis L. Gleason
- Jokes My Father Never Taught Me: Life, Love, and Loss with Richard Pryor by Rain Pryor
- Awkward Bitch: My Life with MS by Marlo Donato Parmelee
- Speedbumps: Flooring It Through Hollywood by Teri Garr
- Strong at the Broken Places: Voices of Illness, a Chorus of Hope by Richard M. Cohen
- Multiple Sclerosis (Biographies of Disease) by Lisa I. Iezzoni
A comprehensive list of books which include even more topics like family and care partners, insurance, employment, financial matters, and more is available from the National MS Society.
I try to live by the ethos of a good manager in my life with MS: “I don’t have to know all the answers, I just need to know where to find all the answers.” Having a good MS library is a good way to have many of those required answers (and even answers to a few questions you hadn’t thought of asking) at your fingertips.
Wishing you and your family the best of health.