Paul Lima - MS & ME

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MS & ME:
From First Signs, To Diagnosis, To Living With Chronic Illness.
What Multiple Sclerosis Is, How It Manifests Itself And What Can
And (Unfortunately) Cannot Be Done About It.

If you are newly diagnosed with MS, know someone who is, or if you are a caregiver of someone with MS, no doubt you have a lot of questions about MS. MS & ME has a lot of answers. it answers questions about: what is and why is MS, different types of MS, various MS symptoms and medications. It looks at MS and diet, exercise, smoking, drinking, relationships with family and friends, sex, pregnancy, and much more. In addition, Paul talks about his personal battle with MS over 20 years and many other people with MS chime in about their feelings and experiences related to MS. In short this is a comprehensive, must-read book about MS. 

Excerpt from Introduction to MS & ME

My name is Paul Lima. I have Multiple Sclerosis (MS). I have had MS since 1998, for over twenty years as of the writing of this book. There have been years when it has pretty much knocked me on my butt. Years when it has given me strange and bizarre symptoms. Years when it has disappeared to wherever MS goes when those with relapsing-remitting MS go into remission and, for the last four years, it has kept me from doing all but walking my dog and teaching some online writing courses for the University of Toronto. Mostly it keeps me sitting on my rear.

Currently, I have chronic headaches 24/7. They are relentless. Plus I have some balance issues, weakness in my legs and some fatigue. But much more on all of that later. Don't get me wrong. I am glad I can do what I can do. I know people with MS who are in better physical shape than I am, but they have brain fog (or what we call brain farts when we find our sense of humor) or cognitive issues. Other people that I know who have MS have to use walkers to get around. I use a cane, but can walk without it, although I appreciate the feeling of stability that it gives me. And still others with MS are confined to wheelchairs and need personal assistants to put them to bed and get them back into their chairs in the mornings. But again, more on all of that later...

...I started this book because, quite frankly, I was bored... ....Then I joined several online MS support forums. I was surprised at how naïve many of the questions were and how frightened many of the newly diagnosed seemed to be. And then it occurred to me, after twenty years of dealing with this disease, I was an MS veteran. Twenty years ago, my questions were just as naïve, probably more so. I was just as frightened, even more so...

...While reading about what those newly diagnosed with MS were experiencing and asking, the project took on a whole new life. There are people, too many people, newly diagnosed with MS who are dazed and confused by their diagnosis. They are rattled and depressed by the diagnosis, as I was twenty years ago. (I was a freaking mess! Just ask my wife.) These people, and their families and friends, need information. Yes, their doctors have information. But they can only dispense information in twenty-minute sessions once or twice a year. Unfortunately, much of it, if you are newly diagnosed, goes in one ear and out the other and leaves you with more questions than answers...

...Yes, there is a lot of information online, and I encourage people with MS, and their family members and caregivers, to read about MS on legitimate sources (see my list of online resources at the end of this book). I also encourage you to join in-person support groups (check with local chapters of MS societies for information about support groups in your area) and online support groups such as Facebook MS support groups or myMSteam, the social network for those living with MS. At the same time, I suddenly felt there was room, maybe even a need, for a book that cataloged one person's twenty-year struggle with MS...

...In addition to sharing my experiences, I share some common knowledge about MS and share what I have learned from many others who have MS. With all of that in mind, I'd like to say enjoy the book, but somehow that feels disingenuous. I mean how can one enjoy a book about a sick person?

If you have MS, I hope that it is not severe and that this book gives you some sense of how you might deal with it. (I am not qualified to help you medically deal with MS, but I will tell you what some people are doing to deal with their disease). And I hope that if you are caring for someone with MS, you will learn that you are caring for someone who is dealing as best they can with a misfortune that is no fault of their own. I hope that you begin to understand that in a world that seems to go out of its way to value so-called normal, and too often is in denial about so-called abnormal, that illness--be it physical, mental or emotional--is just as normal as the rising and setting sun. And what the heck, I hope you enjoy the book!

Paul Lima - June 2018
So what's in the book?

Introduction (What this Book is About)
1 / What Is & Why Is MS (Things We Know; Things We Don't)
2 / First Inklings (I Feel Funny)
3 / Doctors & Diagnosis (Your Guess Is As Good As Mine)
4 / Symptoms and Side Effects (Tastes Like Crap)
5 / MS and Pain: Physical & Emotional (It Really Freaking Hurts!)
6 / You Don't Look Sick (You Look Marvelous!)
7 / To Medicate or Not To Medicate (Grazing in the Grass. Is it a Gas?)
8 / Diet & Exercise (Chocolate & Dog Walking)
9 / Family & Friends (I Have Both; I'm Lucky That Way)
10 / Life No Longer As I Knew It (It May Not Have Been Perfect, But I Miss It)
11 / Final Thoughts (MS is Not a Death Sentence)
12 / Epilogue (The Author Gets Kind of Existential)
13 / Brief List of Online MS Resources (You Can Always Just Google MS)


MS & ME, Paul Lima
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