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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...

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... 

Progressive MS: Looking for answers NOW

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People who live with progressive MS have many questions, but one I hear often is, “When will there be treatment options for me?” Based on what I saw and heard at last week’s AAN, I’m pleased to report that researchers from around the world are making important progress toward treatments and therapies for people living with progressive MS. Several groups presented results or updates from large, ongoing studies involving people living with primary-progressive MS: one, a study of oral laquinimod, an experimental immunomodulator,  in 375 people with primary-progressive MS which recently began recruitment ; second, a clinical trial of oral ibudilast, an anti-inflammatory enzyme used in Japan, recruiting 250 people with primary- or secondary-progressive MS; and third, a study of ocrelizumab – an antibody cousin of rituximab delivered by infusion – in 740 people with primary-progressive MS that has completed enrollment. No results are available yet, but some should be next year, and it’s encouraging to see that these trials are getting under way. I hope the findings provide us with new treatment approaches for people with progressive MS. (Abstracts # P7.210, P7.017) ...

With feet firmly planted

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Everyone said it’d be easy. Cruising, that is. Ships are handicapped accessible, right? So in the fog following my primary progressive multiple sclerosis diagnosis, last winter, I called the travel agents at Expedia, eager to escape our snowy winter and icy sidewalks. I’d cruised-toured just seven months earlier, a 40th birthday trip-of-a-lifetime to Alaska, and though I was undiagnosed, my PPMS had already taken most of the feeling from my legs. I clung to my friend Lindsay as we hiked, visited a sled-dog camp and went whitewater rafting on the Mendenhall River. Now, six months later, my disease had progressed even more, and I was using a walker and scooter to get around. Would cruising really be as easy as I thought? ...

Build with what you have

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Building with LEGOs often results in an interesting quandary: the more one builds, the fewer pieces you have left in the collection, no matter how carefully they might be organized for easy retrieval. Living with a chronic, progressive, debilitating disease like multiple sclerosis is a lot like that. It can be described as “the gift that keeps on taking.” Ones strength, cognitive resources, coordination and stamina are all taken away slowly but surely…sometimes even quite abruptly...

Exciting News for Progressive MS Research

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Hello from the ACTRIMS-ECTRIMS meeting in Boston. Today I had the honor of participating in a press conference to announce important news about the International Progressive MS Alliance. I was joined by my colleagues from around the world to share the Alliance strategies for ending progressive MS, and we also answered questions from a room full of reporters from around the world. The Alliance announced the launch of 22 new research grants to investigators in 9 countries, who will be taking intriguing new approaches to overcome barriers to developing treatments for progressive MS. Many of the new grant recipients were at the press conference, and the atmosphere was electric! ...

Hellos and Goodbyes

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I’m sentimental about endings. When I know I’ve reached one, I pause and hold on as tightly as I can. The last time I sat on the floor with my friends and sang at summer camp. The last time I had dinner with my roommates before we graduated from college. The last night I slept in my own bed at my parents’ old house. These are moments to be marked and savored. They give you a chance to say goodbye. The endings that you don’t recognize are even more poignant. The last time I said goodbye to my grandmother, not knowing that I wouldn’t see her again. The last time I kissed a boy, before an argument that ended everything. I think about these lost endings, which skated by so casually in the flow of an ordinary life. I want to go back and put a mark on those days. Plant a flag. Recognize them for what they were: not always sad, but always important. Moments that defined and framed chapters in my life, even as it changed to become something new...

Good News

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I think it was sometime in September of 2012 that I initially went to see a doctor about my weak leg, which led to my diagnosis of multiple sclerosis, which led to lots of specialists, lots of scans, and lots of follow ups. Suffice it to say: I’ve had a lot of appointments in the past 20 months. And in general, the news has not been good. I always put a positive face on it, but at this stage it’s hard to go in expecting the best. So I was happily caught off guard when my last scan came back BETTER than the last. Finally! It’s what I’ve been waiting for since the whole damn thing started. There’s no new inflammation and the spots in my brain are smaller than they were last time. My neurologist uses bigger words to explain all this, but summed it up with the colorful stickers that she attached to my results...

Progress in progressive MS: Report from the trenches of MS research

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One important way researchers share their latest findings at big meetings like the American Academy of Neurology is during the twice daily “poster sessions.” During these sessions, researchers display the results of their studies on wall sized posters and these posters are pinned to rows upon rows of portable display boards in one of the largest halls of the convention center. During these “sessions” the authors of the posters stand by their boards and are available to present and discuss their work with other scientists. Think scientific speed dating! The MS poster sessions have been jam packed, so it really feels like you are in the trenches of MS research. We are learning more and more about what drives MS progression, or worsening – which many people with MS will eventually experience. Understanding the factors that drive MS progression will provide new approaches to stopping, reversing and restoring what’s been lost. One of these factors appears to be smoking. Previous studies have shown that smoking can increase the risk of developing secondary progressive MS (the progressive form of MS that follows an initial diagnosis of relapsing MS) by as much as 3-fold! The good news reported this week during a poster session on MS health outcomes research is that this risk is reduced by quitting. The authors found that for every year that passes after a person stops smoking, the risk for progression is reduced by 5%. The reasons why smoking promotes progression remain to be determined, but I think we know enough now to strongly state that people with MS who smoke should really stop...

My Silver Lining

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I was diagnosed with relapsing-remitting MS (RRMS) when I was 36, in the prime of my life and career as an athletic trainer. I tried all three disease-modifying therapies that were available at the time but unfortunately none were helpful to me. In 2003, I traveled to Northwestern University hospital in Chicago to enroll in a clinical trial. It was a bone marrow transplant study and even though the therapy had a high mortality rate, I was willing to take the risk to help better understand and treat MS; but I was not accepted.  That was probably the toughest day in all my now 17 years of battling the challenges MS presents; not just because I was not accepted into the trial, but because it was the first time I was told I had primary-progressive MS (PPMS) — I now know that I had PPMS from the start, but because it manifested so slowly, no doctor was able to "label" me with it right away. Hearing I have a form of MS that is chronically progressive and has no therapies felt like being told to “go home and make the best of it” because they had nothing to offer me.