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An Inconvenient Sidekick

Blog Summary

Think of people that you know who have a habit, condition or lifestyle that has a regular impact on their physical well-being. Runners, yogis, vegetarians, people with allergies, pregnant women. I bet you can think of many, many more. I think of these as sidekicks. My brother and his sidekick, CrossFit. My colleague and her sidekick, veganism. If you have a friend or a loved one with a sidekick, you’re going to know a heck of a lot about it, because you care about that person. Understanding the sidekick is part of your relationship. Sidekicks are often so much a part of a person’s daily life that they come up in conversation all the time.  Well, here’s the thing. My sidekick is MS. It’s something that has an invisible but constant impact on my physical well-being and my state of mind. You can bet that I’m thinking about it for at least part of every day. But even after a few years, I still struggle with how much to say about it...

Making Connections

Blog Summary

One of the best parts of writing for the MS Connection blog is reading the comments that readers leave. Yes, you read that right. Sites like this are some of the few places, it appears, on the internet where the “don’t read the comments” rule doesn’t seem to apply. I read every single comment that is left on here, on my personal blog, and on my social media posts. And I delight in receiving emails and private messages. They’re equal parts heartbreaking and encouraging...

Power of Positivity

Blog Summary

Since I was a child, my mom has always said to me, "thoughts become things – pick the good ones." Whether I was tackling a problem at school or going on a job interview, she would tell me to visualize what the result would be and say out loud what I wanted to have happen (if even to myself). "They're going to hire me," I would say with conviction and soon enough this type of exercise became routine.   What I learned much later was that having a positive, optimistic attitude was powerful. Far more powerful than I even realized. It may not have been the direct cause behind finding a solution or getting a job but it helped build confidence and gave me the strength to fight for what I wanted and to go after it. It allowed me to believe that what I was striving for was possible and I was capable of making it happen...

A shift in equilibrium

Blog Summary

Walking through the front door of our very old house I was greeted by the alarming smell of hot metal and something burning. As I ran into the kitchen, I discovered the metal was the empty tea kettle, which was now melting down the side of our 1940’s range and hitting a flooring product from the same decade that contained enough asbestos to just smolder rather than ignite. It was this incident that confirmed my husband of several months could not boil water. That was1988.  ​Things changed with the arrival of our son in 1993 as he quickly picked up the skills of making formula, which requires boiling water. Nothing like a baby to get you acquainted with the kitchen, and – as it turns out – to prepare him for things to come...

Voting Is My Favorite Thing

Blog Summary

I have voted in every national election, and most state and local elections, since I turned 18. I’ve stood in lines outside of schools, courthouses, firehouses, retirement homes, and administrative buildings, eager to register my stance on candidates and issues that were important to me. My passion has endured the frustration of watching our political system fail to serve so many people, and of learning in law school how deeply embedded in our system these failures are. Despite all this, I still believe that voting is the most important way that we participate in the democratic system, and my belief in the importance of electoral participation has only gotten stronger since I was diagnosed with MS. The many hurdles, both practical and emotional, that a person with a disability might face when trying to exercise their right to vote only became apparent as I became acquainted with them myself: losing the ability to walk to school, as after half a mile I found myself tripping and dizzy; becoming unable to summon the strength in my right hand to sign a receipt for my coffee; failing to recognize friends passing on the sidewalk as my vision blurred; missing meetings and blanking on names as my memory became unreliable...

My Voice

Blog Summary

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

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...

MS Symptoms: Researchers Look for Life-Changing Breakthroughs

Blog Summary

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

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... 

From ECTRIMS: New Results on Gut Bacteria and MS

Blog Summary

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...