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The Multiple Sclerosis Manifesto by Julie Stachowiak, PhD

Written by Dr. Julie Stachowiak, The Multiple Sclerosis Manifesto: Action to Take, Principles to Live By contains the most important information for people living with MS, organized under “action” statements and using examples of how this information can most effectively be used to help the readers. This book will be a roadmap, not only providing encouragement, it will also educate and inspire readers to action, both personal and political.

Knowledge is power, but little will change in the medical and health-care industries unless those living with chronic conditions join forces and demand it. And change begins with the individual. The Multiple Sclerosis Manifesto is a call to self-help, self-reliance and political action.

Dr. Julie's Manifesto

I will…

  • Scratch my itchy injection sites with abandon - if you don't like it, don't look.
  • Try not to fly into a rage when someone asks me how long I have left or if I am one of Jerry’s Kids, but I will firmly educate them about MS in a way they probably won’t forget.
  • Open my arms to anyone who tells me that they have just been diagnosed with MS or may possibly have MS and just listen, without lying about everything being okay and without doing a “reality dump” of all the things about MS that are not okay.
  • Remember that if a potential side effect freaks me out, I probably shouldn’t take that drug, as the anxiety would outweigh any benefit I might get.
  • Never compare myself to others – not to engage in self-pity that someone else is healthier than me and not to reassure myself that I am not as bad off as someone else – either comparison makes me feel dirty somehow.
  • Take my child who has just shouted, “Mommy, look! A man in a wheelchair!” by the hand and introduce her to the man (rather than shushing her), and teach her that the man in the wheelchair might be very nice or he might be a nasty son of a bitch, and that the wheelchair is immaterial to who someone is.
  • Someday actually do it – slowly, very slowly make my way across a finish line somewhere, wearing my T-shirt that says “I have MS” on the front and “So why are you behind me?” on the back.
  • Kiss my husband on the spot behind his left ear that always smells good and tell him that I love him, knowing that the bullshit that comes with my MS has made him sigh a little more deeply and watch over me a little more closely as we go through life together.



REVIEWS

"This is a call-to-arms for those living with multiple sclerosis (MS) to take control of their lives and be empowered by someone living with MS. Stachowiak (author of the MS pages on About.com) takes the reader through the basics of the condition, outlining what types of MS there are and the symptoms, treatment, and professional care available. She blends that information with the practical and sometimes intangible aspects of emotional health and enjoying life. With a conversational but authoritative voice, this a positive joy to read and work through. In each of the 12 chapters are brief texts explaining how readers can "Do Your Best," "Know Your Stuff," "Make It Better," and "Take Charge." None of the concepts covered here is new, but it is refreshing and powerful to have them all gathered in one text. One downside: Some of the chapter headings are unclear. Verdict This is an excellent overview of the current state of MS knowledge, coupled with empowering tools for those living with it. Patrons could use it as a launching pad to continue research on their own."-Elizabeth J. Eastwood, Los Alamos P.L. Syst., NM, Library Journal, January 2010

"I wish this book was around when I was first diagnosed with MS. It is straightforward, honest, and practical. A must for anyone living with MS."-Amelia Davis, President of MS Friends, and author of My Story: A Photographic Essay on Life with Multiple Sclerosis

"The Multiple Sclerosis Manifesto is a significant resource for people living with MS. Dr. Stachowiak has drawn on her own experiences with MS in providing a very helpful resource to others who must navigate the real-world to address challenges, barriers, and opportunities. It also demonstrates how people can address these issues individually and collectively to improve the world for themselves and others."-David Chatel, Executive Vice President of Advocacy, National Multiple Sclerosis Society

"...delivers a declaration of war on MS and arms the MS community with an arsenal of pre-emptive strikes encouraging patients to take control of their illness-fully-informed and with dignity. This is the best damn discussion for people with MS and their family and friends. With the Manifesto in hand, hold a mirror up to your MS-self and see clearly how to tactically push back against this insidious disease."-Jeffrey N. Gingold, author of the award-winning book, Facing the Cognitive Challenges of Multiple Sclerosis and Mental Sharpening Stones: Manage the Cognitive Challenges of Multiple Sclerosis


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