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For my Father: Reflections of a U.S. Senator’s Journey with MS

Multiple Sclerosis is a complex disease that has impacted families across the country for far too long. As a United States Senator and as the Ranking Member of the Senate health committee, I believe Congress should be doing everything we can to help the patients and families who are impacted in so many ways by MS. But I also believe this strongly as a family member — because I have seen firsthand how devastating this disease can be.

My father was a World War II Veteran who was one of the first to storm the beaches of Okinawa, and was a recipient of a Purple Heart. Many years later, he was diagnosed with MS...

(Not) The Sound Of Music

“Are you claustrophobic?” asks the radiologist. I awkwardly respond, “No, I’m not...” As I walk down the hallway and into the room with the MRI machine, I ponder…does another scenario exist where that is the opening question from someone I’ve never met before?  Magnetic Resonance Imaging (better known as MRI) is an annual ritual to be endured by most individuals with multiple sclerosis.  The machine, weighing over 11 tons, takes pictures of the lesions on my brain, neck and spine which my neurologist then uses to evaluate the progression of my MS...

Advocating for my father, myself, and my children's future

I was 7 years old when I was invited to attend my first father-daughter dance, a rite of passage for many young girls. I remember standing in our living room, twirling in the new dress we had bought, feeling like a princess. That’s when I was told we wouldn’t be able to attend. My young mind could not comprehend why my father, who was living with secondary progressive multiple sclerosis, could not take me to the dance. I wouldn’t hear the words “multiple sclerosis” for the first time until a year later as an eight-year-old standing in our family kitchen. To this day, tears fill my eyes as I picture the dance invitation and think about my own daughter attending her father-daughter dance. The only difference is that today I am keenly aware of the struggles of MS – as I too was diagnosed with MS just one month after my daughter’s birth. My father’s symptoms began in 1978, but with the lack of MRIs or therapies for MS, he went undiagnosed until 1983. In the early 1990’s the first disease modifying therapy came onto the market, but the disease progressed quickly, and by 1996 he was using a wheelchair permanently. At the age of 19, just three years later, I experienced my first MS attack. Years later, neurologists found over 10 lesions on my brain and I too heard the words, “You have MS,” just like my dad had 43 years before me...

A city of nurturing

The server at Chester’s Kitchen and Bar looks at my tired face with concern and asks sympathetically, “Did you have a lot of appointments today?” That question might seem odd anywhere else but here. This bustling,upscale restaurant draws crowds for its perfect rotisserie chicken, its locally sourced and inspired dishes and its playful bar and dessert menus. But in this location, the query makes perfect sense. Chester’s stands directly across the street from the Mayo Clinic in Rochester, Minnesota...

Thriving in the Face of Adversity

When I was first diagnosed with multiple sclerosis it felt as though my world had been turned upside down. At the age of 25 I had a very clear idea of what my future held, and where I was going. MS threatened to take all of that away from me, and I quickly decided that I would not let it. At first there were plenty of people telling me what I could no longer do, and that I should give up on my ambitions. But I disagreed. I sought out others who strived to make the best out of life and to make a difference despite their disabilities. I ran across so many inspirational people and communities, and soon began to feel invigorated and ready to fight. I am a nurse, and it just so happens that neurology has always been my passion. When I was diagnosed with MS, it was really eye opening to be on the receiving end of healthcare, instead of being the provider. I realized that I now had a unique opportunity to have a positive impact on others living with MS, and I set out to do just that. I became an MS certified nurse just six month after being diagnosed with MS myself, and I began to work for my own neurologist. Currently I am finishing graduate school, and focusing mainly on writing and educating people about MS through my own site, JustKeepSmyelin.com, and several other websites and publications...

Fatigue

Fatigue: how many of you can get through the next few paragraphs without nodding off? Probably not this guy. When I start sharing all the wonderful symptoms that MS throws my way, so many people want to skip over fatigue and go right to the numbness. Most folks have a pretty good idea of what the word "fatigue" means and how it feels in general. But for me, using that word to describe the kind of exhaustion I experience doesn’t seem specific or accurate enough. When that tired sets in, I can’t just wait it out. It's not like being worn out from a workout, where you can recover with a few hours of rest. While I’ve learned that certain things can make the tired come on strong, it can be hard to predict when it’s going to slap me in the face next. A trip to the grocery store, or just a day out with the fam can be pretty good precursors to having a day of the sleeps. Sometimes for no good reason, I will nod off at the dinner table. Once those eyelids get heavy, it’s lights out. There are even days when I think my fatigue might border on narcolepsy...

Progressive MS: Looking for answers NOW

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) ...

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...
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