A Book Review of Managing MS: Straight Talk from a Thirty-One Year Survivor
Author Debbie Petrina makes it clear from the start that she wrote this book to help others manage their MS by sharing both her own disease journey and information she’s acquired along the way. The ensuing narrative delivers that and so much more.
Experience, information, and validation
Overall, Petrina’s book is rich not only in experience and information, it includes validation from licensed professionals and her take on conventional wisdom, peer communication, and advice that feels just right to this reviewer. I’m a lover of the no-nonsense approach without sugar-coating, and Petrina shines in using this tone throughout the book. In private life, she is a tireless problem-solver, determined to find the resources she needs to keep going. In her role as an advocate, she generously shares what services, items, and exercises can ease most of our issues.
For example, the chapter on how heat affects people with MS and what to do about it contains some of the best explanations and advice I’ve ever read. Just as it is in every chapter, Petrina’s goal is to help us stay in the game. Heat doesn’t have to be an element that denies us an adventure away from home.
Learning the difference between bad days and relapses
A section called “Bad Days vs. Flare-ups” offers useful descriptions of the differences between a pseudo-exacerbation and an actual relapse. It also gives us a new term for how we pay for those days that we’ve pushed ourselves past our limits. Every MS patient will relate to each word in this well thought out chapter. What’s more, Petrina describes cause and effect scenarios which I found illuminating.
Other eureka moments
Plenty more eureka moments are couched in other sections including her thoughts about steroid therapy. For me, one such nugget was a reminder that when we wean off steroids we can go through drug withdrawal and our symptoms may worsen for a time, but later the body will adjust. It can take some time before we know to what degree a relapse might have damaged us further. It gave me a new insight into what might have happened during my last steroid experience. No neurologist has ever mentioned it to me. It was one more reminder that I have learned most of what I know about MS by self-education and talking to other patients.
An uplifting and empowering message
In fact, this is the core of Petrina’s message. She makes the point firmly and often that research, outreach, and experimentation provide the pathways to more freedom and independence. Everything she writes is toward that end. As strong as her writing voice is and as energetically as she pulls us along, she is never preachy. More like a wiser, older sister who puts her arm around you and calmly intones that you are worth the hard work you should be doing. It’s nigh onto impossible to stay in a helpless, angry state of mind while reading this book. What seems like a riddle for the Sphinx is just another ordinary question that Debbie Petrina can answer with a list of go-tos and a relevant story to tell about how she achieved it. Tony Robbins has nothing on this little dynamo, an ex-banking administrator with an advanced degree and the wherewithal to make her life whatever she wants it to be. In short, she will leave you breathless, uplifted and ready to tackle each bullet point on your way to a happier you.
There is so much more I’d like to highlight, but I’ll mention just two more sections that are must-reads for newbies and old-timers alike:
“My Ten Commandments”
In the beginning, Petrina delivers a pep talk much like that heard in a team huddle: “…There is no magic pill or shot to make it all go away. It takes work, discipline, dedication, and common sense to take care of yourself…” followed by her list of must-dos. My personal fave is #6: Minimize stress. Here she first thumbs her nose at the silly notion that any mortal could do that—a nod to her readers who are thinking that very thing—then slips into the role of victorious warrior that has met the enemy and made it bend to her will. Her skill as a shape-shifter bespeaks the sum of an incredibly organized, practical mind, loads of experience, and the communication skills to bring it to the MS community in a way we can all understand.
"Let's Talk Walking Aids..."
This section is, I believe, one of the most important. It speaks to a fear in many of us about having to use mobility aids. If you’ve been on the fence about them like I have, this is a must-read. A wheelchair and scooter user, Petrina explains what each is used for and why they are not interchangeable. She also drives home two important reasons to use any mobility aid: improve quality of life by being more of a participant and being safer for doing so. Ever practical-minded, she switched from walker to wheelchair after repeated falls and injuries sustained from it. Pride may goeth before the fall, but it will definitely find its way back after you get outfitted with the proper wheels.
A book for every neurologist's office
This book is so thorough, useful and inspiring that it should be in every neurologist’s office and given to every patient diagnosed with multiple sclerosis. It is available at Amazon and can be ordered from bookstores everywhere.
How many specialists did you see before finding "The One"?