twinscoast2coast
Introduction to Our
Journey with Living with Multiple Sclerosis
Throughout our entire lives we were known as the “Haber” twins. However, today we go by our married names Tamara Kahn and Terry Hord. We have been MS survivors for over 20 years. Our shared experiences led us to create a social media platform called “TwinsCoast2Coast”. Our goal is to inspire, empower, support and educate others about the disease of MS. Our intent is to simply tell our story, including the ugly parts, with hopes that it connects and resonates with those going through the challenges of multiple sclerosis.
We are identical twin sisters who were born in Florida, “the sunshine state”, in 1968. Growing up, we were happy, healthy, and active children. We loved to swim, ride bikes, ice skate and play tennis. As we look back on our early years, we can pinpoint some of the early signs and symptoms of MS. By 1978, we were both very active in sports. However, in the evenings after we had finished with practice, we would both have terrible tingling and pain in our legs. Our pediatrician and parents would tell us we were experiencing “growing pains”. Our doctor told our parents to rub Vicks Vapor rub on our legs to help our aching muscles.
Fast forward 5 years, we are 15 years old. At this time our family unraveled as our mother was diagnosed with terminal cancer at only 35. Our maternal grandparents, whom we were all very close with, had a terrible time grasping the idea they had a child with a terminal illness. Our father, who was 39 at the time, did not have the coping mechanisms to deal with our mother’s disease. This left us in a whirlpool of stress and emotion. A world that was once carefree and happy became a world of family stress and personal turmoil. In the winter of that same year we both became very sick and were hospitalized due to mononucleosis caused by the Epstein-Barre Virus.
We continued to be highly positive and motivated teenagers despite the unfortunate stressors in our lives. We were both involved in many clubs and sports in high school. On several occasions during the hot humid Florida afternoons during tennis team practices, we found it difficult to complete the two warm up running laps around the football field. Our legs would feel heavy and we both again experienced the flushing burning feeling down our legs. Our tennis coach had the misperception that we were not putting out an effort. We were the only two team players that could not complete the warm ups. Looking back, this most likely represented symptoms of early MS.
We went off to college in the fall of 1986. It was a very happy time for us. We conveniently scheduled early morning classes to counterbalance the fatigue we inevitably felt in the afternoon. We now understand that we were experiencing MS fatigue. Still, our college years were productive and enriching for us both as we adjusted to our physical limitations.
Life just stopped for us in August 1992 when our mother passed away. She was only 44 years old and we were both 24. The emotional stress was difficult. At the same time, we found our bodies physically hurting. Following her death, we both began experiencing visual changes, body tingling, and fatigue. Finally, in 1996 I was referred to a neurologist who confirmed MS based on a spinal tap and MRI. I was 27 years old at diagnosis. Tamara was diagnosed in 1998 at age 30.
Treatments early on included Avonex for Terry and Copaxone for Tamara with occasional IV solumedrol. Terry began a double-blind study for Tysabri in 2001, she became stable and felt better than ever being on this medication. After stopping Tysabri in 2013 due to high JC virus titers, Terry noticed progression and was subsequently treated with every new medication that had come out. Tamara started treatment right away taking Copaxone and monthly IV Solu-Medrol. Her progression over the next 10 years became pretty significant with weakness in her left leg to the point she was using a cane.
Over the last few years, we began progressing at a rapid speed. This led to a diagnosis of secondary progressive MS. Over time, we both saw a decrease in our mobility and strength. At this time, we both use wheelchairs to get around. Tamara is still able to walk short distances with a cane. Terry uses a motorized wheelchair daily to get around the house. It is challenging to adjust to needing more help for daily tasks, but we are blessed with supportive family members.
As the years went on, we have lived a wonderful, happy life with supportive families. We are now in secondary progressive MS and face many challenges on a daily basis. We are involved in advocacy, local MS Society, and other organizations. Our mission is to inspire and encourage everyone living with a chronic disease or disability. We look forward to continuing to share our MS journey in our blog post. We are MS advocates. We intend our social media page to be informative, inspirational, interactive and fun.
Please follow along with us on our Instagram@twinscoast2coast, blog, Facebook – Twins to Coast , and youtube.
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