News from April 2013
The Pain of Multiple Sclerosis
Air Date April 27, 2013, 8 am EST on SIRIUS XM Radio – Family Talk 131
The National Multiple Sclerosis (MS) Society reports that 50% of all people with MS suffer from chronic pain.
Dr. Adam Kaplin, medical and scientific advisor to the Montel Williams and Nancy Davis Foundations, provides details of the disease and useful techniques for alleviating the discomfort.
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My story is one of hope, possibilities, and a creative spirit that guides me in virtually every aspect of my life, from well-being to wardrobe to wonders in between. I believe if I can dream it, I can do it.
I have been a singer for as long as I have memory, first in my mother’s arms, then around our family’s old upright piano on Friday nights, and lovingly with my grandfather, a retired Pentecostal minister, as we sang his beloved gospel songs accompanied on slide guitar. As I grew older, music came from a place deep within my soul. When I opened my mouth to sing, my spirit was fed. This was my inheritance and, I believed, my life’s calling. I never gave a moment’s thought to needing a back-up plan.
Embarking on a journey of musical exploration, I tried my hand (or voice) at pop singing, jazz scatting, big band crooning, and songwriting. Fortune led me to studio singing, and the opportunity to be in on-going community with other professional singers and musicians. The music business is a precarious one, affording some a windfall, while most barely eke-out a living. So I happily joined this tribe of creative individuals, and for more than twenty-five years was a singer-for-hire on records, movie soundtracks, and radio and television commercials. I loved the challenge of walking cold into a recording studio or onto a sound stage having no clue as to the project-at-hand: What style of singing would be required—jazz, rock, folk, classical? Would my part have me stretching into the attic of my range, or warming up my alto register? Would I be singing a solo or blending with a group of twenty singers? I loved the surprise. It kept me polished and on my toes… until something unfamiliar began taking control of my body. The unknown suddenly became dread; the thrill, stress and the worsening of my symptoms.
My life changed with one defining phone call in the spring of 1997 when the head of neurology at UCLA informed me that my test results confirmed I had MS. Surprisingly, I was relieved by the news. For years, I had been experiencing worrisome symptoms that no doctor would take seriously, even after explaining a familial predisposition to autoimmune disorders: ALS, MS, and Scleroderma are all in my immediate family tree. Before my diagnosis, alternative health practitioners guided me to improved health. But now my goal was more distinctly defined. I was determined that, through education, attitude, alternative medicine, and lifestyle changes my condition would improve—always keeping in mind that even illness could expose me to hidden gifts and new awareness.
I had been proud of the balance in my life, having chosen a career that was part time during my sons’ formative years. Ironically, just as I was preparing to ramp it up with a one-woman show, MS had a mind of its own and guided me with its tingly fingers away from the familiar, into the unknown. In the blink of an eye, I was coerced into redefining myself, reinventing my life, and reconsidering my dreams—as though life were double-daring me to dig deep and find answers. I was up for the challenge and set off on a quest to learn about this disease, about what was available from traditional medicine and its possible side effects, and what my alternatives might be.
In the meantime, still desiring to be a part of the world, though I could no longer be actively in it, I began building a Website that would allow me to share the philosophies from my show along with some of its music, and to feel that, even in the midst of illness, I could contribute something of value. My spirit began taking off again, filling in the hole left behind by my music career. Though this new endeavor was not my life’s passion, I dove in with a passion as though my life depended on it. I designed furnishings for my home, art for my walls, clothing for my back, and writing for my soul, utilizing most of these creations on my new site. I knew I needed to keep my spirit thriving. It was my best defense.
I began actively nurturing my imagination, encouraging it to run unencumbered and uncensored—allowing enough time and space for life’s possibilities to rise to the surface so that creative insights and solutions had the best chance to materialize where hopelessness could so easily be lying in wait. I found these moments of inspiration in the solitude of the early morning, where my inner and creative spirits rose up and moved me in ways I never thought possible, where I could lift any predetermination as to what my life was supposed to look like or feel like, and where I was able to consciously and unconsciously tackle the challenges at hand. Every morning seemed more exciting than the last. Though the mental energy wore off as the fatigue of the day set in, residual was left behind to build upon the next morning. This process continues to jump-start my days.
MS has been my constant companion for more than 16 years and I feel it is time to respectfully bring an end to this relationship. I continue to treat my health with as much honor and creativity as I do my soul and I refuse to believe doctors when they tell me I will never be totally free from recurring symptoms or that my vocal cords have been too compromised to be dependable again. I am currently participating in a therapy called Network Spinal Analysis, a series of gentle touches along the spine that reinvigorate the nervous system. For me, it is doing just that. I know that MS is unique to every body, impossible to predict or to personally define. I also know what my norm has been for almost two decades, in and out of exacerbations. Since investigating this therapy mid 2011, I have been on a slow but miraculously steady rise out of weakness, fatigue, confusion, malaise, and extreme discomfort. And my life force, my power is returning.
I believe our bodies seek wellness and that there are answers to be discovered if we become creative sleuths and trust that we can make a difference in our own health. And I am ready to reclaim the rest of my life with a new song called, You Gotta Go On. I do not sing it with the power, confidence, or control of years past. But I sing it. And that is a start. We do not have to live haphazard lives. Our existence can be shaped by deliberate action and consequence. If we engage our days with an independent spirit and with confidence and trust in our own instincts and abilities, we encourage the flow of new ideas. As creative individuals, we light our own fires and, in turn, we may brighten the way for others.
Life is amazing—in sickness and in health.
SecureACure4MS.org is run by Sharon the founder of the organization and her best friend Heather who is the co-founder. They are wonderful women who are passionate about finding a cure for Multiple Sclerosis. They provide the MS community the ability to have the latest Multiple Sclerosis information and resources and are continually raises MS awareness and understanding for the disease. They have a weekly radio show that gives the community and followers the ability to ask questions of experts in different fields. Nancy Davis was featured on their weekly blogtalk radio show yesterday, and discussed the Race to Erase MS foundation, our Center Without Walls Program, what drove her to set up the foundation, resources we offer, and research that the foundation is funding. She also was able to discuss the Race to Erase MS 20th Anniversary Gala and MS Forum and Health Expo that is coming up May 3rd and 4th.
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