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My Voice

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Once upon a time, in a land far, far away there was a boy named Michael. 

The land was Europe. Frankfurt, Germany, to be exact. It was September 1980 and it was Michael’s first day of kindergarten. 

Michael, the youngest of three boys, was excited to finally join his older brothers at school. His mother, Frances, walked proudly with him to Frankfurt Elementary #1...

A Story about Shoes

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This is a story about shoes. My favorite shoes. They were deeply impractical, very high heels. But they were full of good memories — parties and weddings and the feeling of being all dressed up with somewhere to go. The truth is, I hadn’t worn these shoes in years. They were dusty and creaky when I found them in my closet recently, behind some sweaters, where shoes have no business being. That’s where I threw them, almost four years ago, when I was diagnosed with MS...

MS Symptoms: Researchers Look for Life-Changing Breakthroughs

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Stopping the effects of even one MS symptom can be a life-changing breakthrough for an individual with MS. I’m encouraged by the many strategies I heard about at ECTRIMS and its companion meeting, Rehabilitation in MS (RIMS), and am hopeful that they can soon be put into action to change the lives of people with MS.Fatigue – Dr. Vincent de Groot (Vu University Medical Center, Amsterdam) reported results from three clinical trials, each testing a different strategy to see if it could lessen fatigue over 16 weeks in approximately 90 people with MS: aerobic training, cognitive behavioral therapy, and energy conservation management.  Only cognitive behavioral therapy effectively reduced severe fatigue in this short-term study. We know that psychological interventions are a part of managing fatigue, and these results certainly support that...

Research News on Secondary Progressive MS from ECTRIMS

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​Greetings from London, England, on the final day of the very busy ECTRIMS meeting. There have been more than 1500 research study results presented over the last few days. If anyone wants to see the depth and breadth of the research, the abstracts (summaries of conference presentations) are freely available here. Also, I hope you’ll catch other blogs by my colleagues related to HSCT, progressive MS, gut microbiome and coming up on Monday, symptoms and rehab solutions.   Beyond formal presentations, I think the best part of conferences like this one are the hallway conversations and spontaneous meetings that often lead to new collaborations and ultimately, new breakthroughs. At a conference as focused as ECTRIMS, the exchanges are, “all MS, all the time.” ...

Progressive MS at ECTRIMS: New Directions and Challenges

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Greetings from the second full day of the ECTRIMS2016 conference in London. Today was packed with research presentations and poster sessions, all about MS.    There are many different topics being covered at this meeting, and I’d like to focus this blog on one I’m particularly passionate about, progressive MS. A press conference yesterday hosted by the International Progressive MS Alliance, which I help lead, announced new investments of over $14 million US dollars to support three Collaborative Network Awards. These international teams were selected to accelerate the pace of research in key areas... 

From ECTRIMS: New Results on Gut Bacteria and MS

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The ECTRIMS meeting has been a great place to connect with researchers on what’s truly exciting in MS research. I’ve especially enjoyed hearing about an area of investigation that is moving forward quickly – from initial observations toward treatments or solutions for people with MS. From what I've heard this week, researchers who are looking at the gut microbiome and its role in the MS immune attack are doing just that.    Drs. Yan Wang, Lloyd Kasper and colleagues from Dartmouth Medical School and Eastern Washington University built on previous work, which had shown that modulating gut bacteria during MS-like disease in mice induced specific immune cells (called Bregs – or regulatory B cells), and these Bregs reduced disease severity...

ECTRIMS 2016: Bone Marrow Transplantation (HSCT)

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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

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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

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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...