Samantha's Story

"I was diagnosed with Multiple Sclerosis in 1992. At 26 and newly married, I was stunned by the news and eager to learn everything I could to fight this disease head on. At that time, my doctors had very little to tell me. They knew of no cause. They had no cure. And, because MS is a highly unpredictable disease, they had no answers about how this would affect my life.

Like many people, when no one can give me answers, I go in search of them. The Internet was not available in 1992, so I did my research by going to the bookstore and reading everything I could get my hands on. However, I wasn’t starting from scratch. My father had been diagnosed with MS seven years earlier—an experience that both informed and complicated my search for answers. Learning to separate my experience, diagnosis, and needs from his was another dimension of my challenge. My MS was “relapsing-remitting” while my father’s was “chronic progressive”—a form of MS characterized by a steady decline over the years with no periods of recovery.

In the early years, when my symptoms were mild and not evident to others, I often felt very alone. I didn’t know anyone else who was going through what I was going through. I felt isolated, but didn’t reach out for help. I kept my MS a closely held secret—only sharing it with my family and a few close friends. I made convincing excuses for my occasional disabilities, blaming them on skiing and biking “mishaps” that must have made me seem accident-prone. When I did tell people, I wasn’t always prepared for their reactions. Bad news makes people uncomfortable. While they meant well, they said things that demonstrated they had no idea what I was going through. They also had a lot of questions. Those conversations took a lot of energy and I often came out of the experience feeling worse for it. It wasn’t until I started using a cane, that I began to share my secret and be an advocate for others. Since then, I have felt a special connection with other people who are dealing with hard challenges in their lives and that, in itself, has been a blessing.

Over the past 23 years, I have had seven significant exacerbations. Most of these attacks impaired my ability to walk for months at a time. When my son was only a year and a half old, I had an especially severe “attack” from a lesion in my neck. Partially paralyzed from my neck down, I could not walk, type, or button my clothes for several months. Just taking a shower and getting dressed in the morning was exhausting. Worse, I couldn’t carry my baby. For a year, I went through physical therapy three times a week, endured several rounds of steroids, and began a strict dietary regimen. Patience and perseverance paid off for me. Less than two years later, I took a ski lift to the top of a mountain in Solitude Utah not knowing if I had the strength or coordination to ski again. I cried on the way up that mountain because I was terrified and I cried on the way down because I was ecstatic. That day I learned that anything is possible. If we don’t challenge ourselves and take risks, we will never know what we are capable of. It is a lesson that has served me well in every facet of my life.

Since my diagnosis, I have learned an immense amount about medicine, nutrition, the human body, psychology, and the indomitable nature of hope. I’ve tried many drug options. I’ve explored the mind-body connection and alternative therapies. I’ve been yeast-free, wheat-free, sugar-free—you name it. I’ve been there and done that (or at least considered it.) I’ve spoken to doctors around the country, learned the nuances of multiple therapies and treatments, and counseled many friends, friends-of-friends, and strangers about MS.

When my diagnosis came, I had big plans for my life--dreams for a family, career, and lifestyle that all seemed suddenly in jeopardy. But problems are opportunities, so I approached my diagnosis believing the best and looking for the gifts that might be found in the suffering. I have worked through every obstacle MS has thrown up in my path. Along the way, in spite of the MS and because of it, my big plans have been realized and turned into a full and rewarding life. Since 1992, I earned my MBA, founded a successful company, traveled extensively, and most importantly, am raising a bright and beautiful son with my wonderfully supportive husband.

When I talk to those facing a new diagnosis, I encourage them to be pro-active and optimistic. There is much to be optimistic about. There are numerous new drugs on the market that have proven clinical benefits—and we are making exponential strides each year. I also tell them to beware of the Internet. There is so much misinformation, quackery, and negative images that it can only lead to confusion.

That is why I started TurnFirst. I want everyone newly diagnosed with MS to have a safe and constructive place to turn to when they have questions, need support, and want to plan an approach for themselves that will help them follow their dreams.

I’m especially grateful for the support I have had from my friends and family over the years. Without their love and encouragement, I would not have realized my dreams. TurnFirst is dedicated to them."

To learn more about her and TurnFirst, click here for Bethesda Magazine Feature story.

Samantha Guerry was born and raised in Washington, DC. She earned her undergraduate degree from St. Lawrence University, and her graduate degree at Johns Hopkins University. For ten years, she was the founder and CEO of Sightline Marketing—an award winning “Inc. 5000” marketing and communications firm that specializes in professional service markets. She serves as a trustee for St. Lawrence University and as an advisor to PoetLore, the nation’s oldest poetry journal.  She is an avid writer, naturalist, and artist.