MS Connection Blog

We Must Rally for Medical Research

When I finished graduate school and decided I wanted to do research on neurologic disease, I went to work with one of the first women studying myelin, Dr. Marjorie Lees. Marjorie inspired me to build my research around understanding myelin and oligodendrocytes which are damaged in MS.

Over the years, my research has built on her training and kept me focused on identifying how myelin is made and repaired in the brain. There has been very exciting, fast progress over the past two decades in identifying new therapeutics that reduce the immune component of MS, but there remains damage in the central nervous system.

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I am not by nature a particularly self-confident person. I constantly second-guess myself. I never expect people to stop and listen when I speak. I always worry I have a booger in my nose.

My friends are surprised when I tell them this. To many of them, I am an accomplished, smart, funny woman who’s done at least an okay job of living life, raising two kids and writing a few books and blogs along the way. But no matter how much I manage to get done, I never give myself much credit...

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Kids DO get MS

Last week my husband and I went to Capitol Hill and spoke to more than 30 congressional members and staff who were gathered to learn more about a topic close to our hearts: pediatric MS. Together with the Director of Partners Pediatric MS Center and Associate Professor of Neurology at Harvard Medical School, Dr. Tanuja Chitnis, we helped shed light on a diagnosis that affects an estimated 8,000 to 10,000 children and adolescents, including our son Sean.

Sean's symptoms started when he was just 7 years old. He was dizzy, off balance, and had slurred speech. We took him to the emergency room, where – during the course of a weeklong stay in the intensive care unit – a battery of tests was performed and a diagnosis of Acute Disseminating Encephalomyelitis (ADEM) was made. I remember reading about ADEM and the mention of MS, but I never thought twice about it since we had heard that “kids don’t get MS.” ...

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Living on the ledge: Why MS can’t kill my travel bug

I’m about a half-mile down the wooded Lost Lake Trail when I start to question what I’m doing here at Ledges State Park.

Prudence, my shiny purple walker, rumbles over the gravel and through the woods on this accessible trail while my tired 8-year-old whines for a snack, our fishing pole flops in my walker basket, and my rambunctious black Lab tugs on her leash. Remind me again why I thought this was a good idea?...

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Letter to my daughter

The night after your 7 month birthday, you and I were alone in the home. That evening, I would breastfeed you for the last time.

I sobbed, Naya. I desperately begged my body to file away and remember the feeling of feeding you, knowing inevitably I would forget how it felt the moment we were finished. And so I was mad. I was mad I had this disease. I was mad that I had to take these medicines. I was angry that the choice of when I was done feeding you was being ripped from me and no longer on our terms. Knowingly, you instantly pulled away from me and looked up at my face, perplexed. So I sat you up on my lap, each one of your tiny legs wrapped around my waist. And I spoke to you. Really spoke, for the first time in your life...

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Gaining Access

People who don’t read poetry often avoid it because it’s “inaccessible,” confusing, compressed, and in need of very focused attention. They want to figure out the puzzle, rather than let the poem wash over them, ask it questions, and read it again. To me, poetry is far more accessible than many novels; of course, it’s what I do and what I’ve studied, but poetry also provides the reader with a burst of self-sustaining energy so powerful that it blows me away. Poetry is immediate. Cognitively, I can pay attention to it without getting lost or forgetting plot points.

Poetry is also easier to read for me, physically, than prose. My eye doesn’t need to move as much in order to keep up. What is inaccessible to most readers offers me access to the world of words, to my world, where poetic lines serve as a form of automatic doors, or elevators, or accessible parking spaces, ramps, lowered countertops. It invites me to experience it without discomfort. Poetry shapes itself around my needs, unless the page is bright white or the print is incredibly small, or the pages so thin that the letters swirl together, backwards and forwards. 

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Dragged to the curb

When it got dragged to the curb, my good friend and neighbor Michelle, walked across the street and remarked, “Aren’t you embarrassed that everyone will know you have furniture like that in your house?” 

We burst out laughing as my favorite recliner was now perched upon a frozen snow bank, full of stains, the wood frame showing through the rips of upholstery that Flash, our cat, created. The replacement was delivered, it was the perfect color, updated style and it swiveled. It was this feature that landed me in rehab with a broken leg. Getting there was more painful than the break...

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Lifestyle Research Points the Way to Wellness

This past week’s ACTRIMS-ECTRIMS Joint Meeting brought together nearly 9,000 people — most of them researchers — from across the globe to share results and make connections with others who want to find solutions for multiple sclerosis. In addition to presentations and training courses, the gathering featured an incredible number of posters — more than 1,000 — each one representing research that has the potential to change the lives of people with MS.

Poster sessions give a group of researchers the opportunity to present their work in a condensed format, literally on a 5-foot by 3-foot sheet of poster paper tacked to a board. Each poster outlines the scientists’ methods and outcomes with text and graphics.

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Life when your teenager has MS

About 5% of people diagnosed with multiple sclerosis are under the age of 18, usually as teenagers (for clarification, MS is classified as “pediatric” if it occurs in a person younger than 18). As remembered by pretty much every adult, this is a challenging time for virtually everyone, emotionally, socially, mentally and physically. Throwing in a diagnosis of MS can only further complicate matters as a young person is trying to figure out who they are and who they are becoming.

This is a difficult time for parents, as well. For parents of healthy teens, this is a period of learning when to let go, when to be firm and when to compromise. Many teens question their every move, just as their parents question many of the parenting decisions that they make throughout each day. In a study done on parents’ experiences of pediatric MS presented in a session entitled “Parent experience of pediatric multiple sclerosis” at the 2014 Joint ACTRIMS-ECTRIMS Meeting, all of these same dynamics and feelings seem to play out, but in a much more intense way...

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MS Genetics Research Hits Home

People affected by MS sometimes ask me: “It’s great that they found another gene that is linked to MS, but what does it mean for me?” Well, the genetics research I’ve heard about at this week’s ACTRIMS-ECTRIMS meeting has given me great answers.

Dr. David Hafler (Yale University) launched the discussion when he delivered the keynote lecture during the opening ceremony. Dr. Hafler and others founded the International MS Genetics Consortium, a team that has turned MS genetics on its ear...

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