MS Book Review: The Multiple Sclerosis Toolbox

How many of us have looked for some sort of manual, guide, or workbook for dealing with the day-to-day uncertainties of MS following diagnosis? I know I sure did.

If I couldn’t find one, I’d seek out memoirs or even fiction where the main character is someone with MS. But there aren’t many of these books out there. Most I find today are technical, filled with medicalese that reads like research papers.

When I recently saw Ed Tobias’ new book, The Multiple Sclerosis Toolbox: Tools and Tips for Living With MS, I was instantly intrigued.

About 'The Multiple Sclerosis Toolbox'

This book lives up to its promise: it provides a simple set of “tools” captured in chapter form, each one focusing on a different relevant aspect of understanding and living with this disease.

The progression (pardon the pun) of chapter topics makes sense. Tobias starts with a fundamental explanation of what MS is. Then he explores testing, diagnosis, and prognosis. A solid expansion into treatments and diets follows, and then we get to look into so many of the day-to-day aspects of living with chronic illness:

• doctor visits
• disclosure
• relationships
• sex life
• economics
• assistive devices
• travel
• self-care
• “Dr. Internet”
• disaster preparation

Finally, Tobias shares his 40-year MS journey. From his experiences, the newly diagnosed may discover a pathway forward, especially given improvements in diagnosing, treating, and living with MS which have occurred over this period.

About the author

Writer Ed Tobias spent more than three decades working for the Associated Press in the Broadcast Division in Washington DC as Assistant Managing Editor for News Coverage. During that time, he helped build the AP’s online video operation.

Currently, he writes a column/blog called The MS Wire whichshares news and personal experiences related to life with MS. He also consults with companies in the health care, medical, pharmaceutical, and social media fields and reviews research grants linked to MS interests.¹

In The Multiple Sclerosis Toolbox, Tobias gives readers a brief personal timeline of his own experience using plain language. He shares his experiences with specific kinds of treatments and technologies and is honest about his journey.

What readers can take away from 'The Multiple Sclerosis Toolbox'

People newly diagnosed with MS will truly benefit from this book, while those of us who’ve lived with MS for a while will wish we’d had it ourselves!

I’d also add that anyone still under observation for an MS diagnosis (yes, those people still waiting months or even years for clarity on their symptoms) will find much of this book useful and empowering.

Tips on topics your doctor forgot to discuss

What did I like most about Tobias’s book? The practical tips, lists, and advice which cover territory that's generally overlooked in the doctor’s office. While healthcare professionals treat diseases, symptoms, and disabilities…they're not great at offering advice about the daily grind of:

• managing work life while living with MS
• explaining MS to your children
• finding the right assistive tools for running errands
• reassessing one’s relationships post-diagnosis
• preparing for a vacation

…and so on.

Geared toward the newly diagnosed

Tobias does a great job of writing about life with MS in a straightforward, easy-to-understand approach in this book. He’s also written it clearly with the newly (or about to be) diagnosed person in mind.

For example, he writes about common complaints from others regarding neurologists “who hand patients a handful of pamphlets about MS medications and say, ‘look these over at home and make a choice.’” He responded by creating an MS drug chart listing all medications currently available, sharing how they’re taken (pill, injection, or infusion), their efficacy, and how frequently they’re administered.

Thankfully, my neurologist was far more helpful in guiding me toward my best treatment options, yet I know many others given zero help by their doctors when it came to treatment decisions. This chart would be super handy for them.

A list of questions for your doctor

Tobias also gives readers a good "basic questions" list to take to the clinic to better communicate their concerns and get the information they need.

This book is also quite up-to-date, considering it even reviews the importance of getting vaccines that include those for COVID-19. I do imagine that, as time passes, Tobias will need to generate updated editions as treatments, devices, research, and technologies change.

Any shortcomings in the book are minor. I do hope that a future edition will include more information on telemedicine and an index, and I know lots of folks with MS who’d enjoy an audiobook version.

But overall, I think neurologists should consider keeping a copy of this book in their waiting room because their patients are going to need it.