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ECTRIMS 2016: Bone Marrow Transplantation (HSCT)

Blog Summary

It’s nighttime here in London, England after the first full day of ECTRIMS – the European Committee for Treatment and Research in MS. This meeting is the world’s largest gathering of MS researchers in the world, with more than 8,000 clinical and research professionals from across the globe, including many Society-funded researchers and fellows, meeting to share their cutting-edge research findings, to network and collaborate.   It was a jam-packed day of science!  For this blog, I want to share my impressions of a staged debate that was focused on the topic of hematopoietic (bone marrow) stem cell transplantation – HSCT for short...

If I’d Never Met You

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Quietly, a phantom thief, you forced yourself into my life, slowly but violently inserting your existence into mine. Uninvited, you rooted yourself into my very core and silently grew inside of me, victimizing my vulnerability and tattooing your intention on every piece of me. You suck nearly every ounce of energy out of me, while I desperately and frantically try to forge, steal, manifest any remaining vigor I can manage to grasp and tear out of your hands.   If I’d never met you, people wouldn’t tilt their heads to one side, eyes full of pity, and offer their condolences when they learn I’m sharing my life with you. I wouldn’t have to suppress memories of what I perceive my abilities once were, because they’re too painful now...

How I Use My Voice for Better Care

Blog Summary

As I journey past the 30-­year mark of my life with multiple sclerosis, I am profoundly grateful for the research advances that have taken place since my diagnosis. They allow people in the MS community to hold on to hope while living with an unpredictable and incurable disease. In the dark ages of my diagnosis I felt scared and alone. With no FDA-approved medications and the internet in its infancy, I didn’t know where to turn. My world went from living color to black and white. From the angst and loneliness I felt, along with the absence of a treatment to control my disease, I became angry and frustrated. How could I possibly be proactive about my health when the medical community could only recommend I go home, rest, and call if I had a flare-up? My future looked bleak...

Moments in Time

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There are certain moments in your life that you’ll never forget. For me, those include the moment when I realized my husband was about to propose, when I first laid eyes on my daughter and when I was told I had multiple sclerosis.   I remember it like it was yesterday. I had just spent the last four days on a wild goose chase trying to understand for the life of me how the vision in my right eye just seemed to disappear. After several doctor appointments and tests, no one seemed to have any answers; but, I knew deep down something was terribly wrong as I impatiently awaited the results of my MRI...

Nice Bike

Blog Summary

Looking down into my family room from my kitchen table, I noticed my blue, metallic walker with the seat on it had become an end table. Fortunately, it blends in well with the blue décor of the room. It holds the remote, phone, keys, papers, snacks and it’s portable. It has become such a part of the furnishings that I forgot I once used it to get around. Now it is being repurposed as furniture or auxiliary seating. This realization made me a little queasy, because I couldn’t remember when I stopped walking. I know it was a gradual process and I’m assuming that comes from having MS for many years.   Signs of the struggle to stay on my feet are all over this house. The wallpaper alongside the door leading from my bedroom into the bath is completely worn away from clutching the frame to steady myself as I made the transition from carpet to tile. Grab bars at all heights and angles now go unused except for the one of three in the powder room, which is perfect for hanging towels...

On the shoulders of giants

Blog Summary

My multiple sclerosis diagnosis came as a total shock. Total shock as in going to the emergency room for a follow-up to a nosebleed and leaving four hours later with Bell's Palsy, a CT scan, contrast and no-contrast MRIs, and a preliminary diagnosis of MS. No kidding, it was that fast. I have two photos in my phone as an odd sort of commemoration. They are of the ER exam room just as I saw it shortly after the doctor left the room. My life changed a few minutes before 12:51pm. At least that's what the timestamp on the photo shows. After hearing the matter-of-fact medical opinion, I sat on the examining table, smartphone in hand, furiously using Google. I wanted to learn more about the two-ton weight that just swung into my gut that left me utterly lost. I could not understand how I could have this chronic illness and display none of the stereotypical symptoms...

Going for Gold

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It was a beautiful spring day. Crisp air and clear skies accompanied me as I jogged through our neighborhood.  Oftentimes, I juggled work ideas in my head during my runs and this one was probably no different. But when it happened, I was actually pondering whether I should take our dog, Jäger, with me on a run the next day. I even remember the exact house I was in front of when my left leg gave out...

Say “YES” To YOU!

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I’ll never forget him in his ill-fitting trench coat and his cartoonish large head towering over us, just a bunch of wide-eyed, snot-covered children at Tonawanda Elementary School. His name was Officer McGruff, the Crime Dog. He pointed his furry finger at us while an accompanying, un-costumed police officer warned us against the dangers of drugs. I looked up to McGruff. We had a bond. We understood each other. I knew this because a year or two earlier, I had won a safety poster drawing contest and was awarded with my very own plush McGruff doll. It may as well have been an official sheriff’s badge and a key to the city. I was now a safety expert. I took everything he stood for to heart. I mean, he had a trench coat and everything!

The MS Handshake

Blog Summary

Out here in Texas there aren’t many fans of the D.C./Virginia sports teams so whenever I wear any Redskins, Nationals or Hokies gear, it stands out.  Last week, while I was at the store, an older man started a conversation with me. “Go Nationals!” I heard him exclaim as he was staring at the Washington Nationals hat I had on...

Dear Scholarship Donor

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It is with eyes full of tears and a heart full of gratitude that I write this letter. I am a 35-year-old mom of two children, Jason and Jocelyn. When they were born, I was working while pursuing a degree in business administration. However, when my youngest was about six months old, I was taking her for a walk when my legs began to feel heavy and I fell. I began a two-year journey of testing and seeing specialists, with no answers until I was diagnosed with multiple sclerosis in 2012. I knew my children were growing up. They were so full of life and I felt like my life was being sucked from me one nerve cell at a time...

A Morning Prayer

Blog Summary

​My nemesis, the alarm clock, is shouting at me, urgently notifying me that it’s time to leap out of bed and go to work for the day. My eyes snap open. I can see! Without thinking at all about it, I contract the appropriate muscles in my side and my arm to slap the snooze button for the fifth time this morning. I have to use the bathroom, but I can hold it and I take a moment to appreciate that fact.   Sunlight is seeping in between the window blinds, slowly illuminating the room with its warm glow. What else can I see? ...