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MS Repair: Rapidly moving out of the lab and into people

When I was in the lab, my research focused largely on using mouse models of MS to test concepts that couldn’t be explored in people yet. Studies presented at this week’s AAN meeting are making it clear how far research has advanced since that time. Case in point: I never would have thought just a few years ago that I would be writing about myelin repair in people, not mice.

So it was pretty exciting to see a presentation Wednesday evening showing the first results of a clinical trial of the myelin repair strategy called anti-LINGO, which is being developed by Biogen. This study involved giving this IV infusion or a placebo every 4 weeks for 20 weeks to 82 people who had experienced their first episode of optic neuritis. Optic neuritis involves inflammation of the nerve that connects to the eye, and it’s often one of the first signs of MS...

The plot thickens on diet and MS

To think that you might be able to change the course of disease, or at least relieve symptoms, by eating or not eating specific types of food is enticing. However, “the proof is in the pudding,” scientifically speaking, since studying diet is challenging. That’s why it’s been exciting to see how many researchers are trying to do just that at this week’s AAN Meeting. Diet and MS has been the subject of numerous platform talks and poster sessions, showing that clinicians and researchers are asking the same questions we hear so often from people living with MS. In a small study, Dr. Rocco Totaro and a team from the University of L’Aquila in Italy tested whether a six-week diet that was low in saturated animal fats, and high in antioxidants, would be associated with positive changes in body composition and fatigue in 17 people with relapsing-remitting MS. In their study, the percentage of body fat decreased, and fatigue as measured by a clinical scale lessened significantly as well. We need more and larger studies like this, to show how diet may impact symptoms that affect the lives of people with MS. What does it mean for you now? A healthy diet certainly can’t hurt, and it may even help both MS and general health. (Abstract P2.211) ...

Finding faster, easier ways to measure MS

When I was a lab researcher, it was all about digging deeper to find a specific scientific answer. But when it comes to helping people cope with their MS right now, we need to be able to find answers that don’t require so much digging. Emerging technologies and strategies are beginning to allow us to measure and predict the disease and its effects, and take stock of how treatments are working, without making people endure yet another invasive test. Now I find myself at the American Academy of Neurology (AAN) meeting in Washington, DC.  It’s been fascinating to hear about the many clinicians and scientists who are working to devise quick tests to detect MS activity and damage – often before there are any outward signs that the individual or doctor can see...

Thumbs Up

One of the hidden blessings of living with multiple sclerosis is how much more time I’m able to spend at home with my family. There are no long hours at the office nor cross-country business trips that keep me away for days or weeks at a time. But within that good fortune is a difficult paradox to navigate: I’m here, but technically, I’m not always *really* here...

Home Modifications: From Falls to Freedom

After my multiple sclerosis diagnosis in 1997, I knew that I would be faced with obstacles in my life, but didn't know when they would occur or what they would be. I was a school teacher and coach, a former college athlete and father of two daughters. In my mind…I was still invincible. In 1999 my son was born, and like most fathers I still remember dreaming of the day I would get to run alongside him, teaching him how to ride his bike. Four years later that day came. I placed my hand on his back and together we took off down the street ready for his first ride…or so I thought. My legs simply would not move. My son fell over on his bike and my strong legs could not run to help him. That was the moment I realized that MS was going to affect me more than I had anticipated. It had slowed me down and tainted a moment I had looked forward to for years...

Longing for the bluebells

They cover roadside meadows like a carpet from late March to mid-April, these wildflowers that are Texas’ official state flower. Bluebells are a welcome temporary break from the cold, wind and slush still clinging to life back home on the Plains. And the locals in and around Fredericksburg, Texas, know it. You can buy towels, sweatshirts, Christmas ornaments, note cards—well, just about anything, really—with bluebells on them. For me, it’s enough to drive with the windows rolled down and drink in the colors. And driving in the comfort of your own car is a big MS equalizer...

Seaside

I was diagnosed with MS in 2010 and it was a turning point in not only my life, but also my marriage. The first few months were full of uncertainty and tears but the one constant was (and continues to be) my amazing wife Meg. In the first year, I lost more than some people do in a lifetime of battling MS. With every flare up the fear of what I might lose next is always present. MS has changed so many things in our lives, but we will not let traveling be one of those things. As I transition into secondary progressive MS, Meg and I are ready to document and share our journey. And with our 8th Anniversary just around the corner I can’t help but look back...

MS, Relationships and Intimacy: An interview with Dr. Peggy Crawford (Part 1)

We recently sat down with Dr. Peggy Crawford to discuss relationships and intimacy. As a health psychologist, Dr. Crawford has worked with individuals and families with multiple sclerosis for the past 25 years. She was a member of the staff at the Mellen Center for Research and Treatment of MS at the Cleveland Clinic and then a faculty member in the Department of Neurology at the University of Cincinnati. Over the years, Dr. Crawford has been actively involved with the National MS Society as a presenter, consultant and committee member and with CAN DO MS as a member of the program staff. In your experience working with people with MS, what do you see as the greatest challenges that couples face when it comes to MS and intimacy?...

Paving the way for MS research

It all started 30 years ago when I noticed that my vision deteriorated suddenly. I had always had 20/20 vision, so I became acutely aware that something was wrong when my TV started looking blurry, I mixed up my colors and my depth perception was off. Unnerved, I sought out a doctor’s opinion. I was relieved when he ruled out a brain tumor, but I was left with no definitive answers. As time passed, my vision gradually improved, but I started noticing other seemingly unrelated issues. Occasional muscle spasms would come and go when I wrote. I was getting much more tired during my weekly golf outings. Again, I set off to see my doctor but he dismissed both of these symptoms as dehydration...

With feet firmly planted

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? ...

Helping Others can be Healing

For the last few years, I have been making Rice Krispies treats and giving them to others. Although I am a pretty good cook, I have been drawn to make these easy cereal and marshmallow treats with rice cereal or corn flakes, and molding them into seasonal shapes. (They are, after all, gluten free!) For the Super Bowl, I make footballs. There will be flowers for Spring, Autumn pumpkins, candy corn shapes for Halloween, wreaths for Christmas, and right now, I am trying to design something that looks like a ground hog for our annual Ground Hog Day celebration. I have posted pictures of my creations on social media. My sister teases that my fixation with these sweet creations is an “addiction” and suggests I need an intervention because I “can’t stop anytime I want to.”...
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