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Thank You for Your Service

Blog Summary

As we prepare to celebrate Veterans Day, my husband Nick and I look forward to a very special phone call that we get—a call from our oldest son, Nicholas, an active duty Air Force Captain.
 
Nicholas calls my husband, a 23-year Army and Desert Storm veteran, and my father, also a 23-year Army and Vietnam veteran, on Veterans Day. No matter where he is, if he can call, Nicholas does. He gets it...

A Journey of Hope

Blog Summary

It was a beautiful summer day. I was riding my bike and my wife, Kathy, was walking. When we met back at our starting point, she said to me, “I’m walking like I had a stroke.” I put the bike aside, stood behind her and asked her to show me what she meant. For the next six and a half years, we pursued an answer for Kathy’s “drop foot” and other worsening symptoms. Countless doctor visits, tests, and poking and prodding. Sometimes we were presented with what it wasn’t, and other times with what it could be. But, nothing ever definitive...

Turning Adversity into Opportunity

Blog Summary

When you’re faced with an adverse situation, there are three ways to look at it: a problem, a challenge or an opportunity. A problem is something that festers—it negatively affects your life. A challenge is a struggle that you must overcome. Now, looking at those two options, it would seem there’s nothing but gloom and doom when you’re faced with a troubling news. But there is another way to look at it...

A Story about Shoes

Blog Summary

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

Blog Summary

​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

Blog Summary

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

Blog Summary

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

Blog Summary

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

Blog Summary

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

Blog Summary

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

Blog Summary

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...