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Bedside Thoughts

Blog Summary

I write this from my wife’s bedside in an acute respiratory rehabilitation unit in a South Florida hospital. We are beginning our 7th week of hospitalization. You may ask yourself, “What does the journey of this couple have to do with MS?” The answer is: everything.

The purpose of this blog is more than a source of therapy for a spouse caregiver and greater than the need to rant about the inequities of life. The sole purpose of this article is to shine a very bright light on the difference between MS-related fatigue that may accompany an exacerbation and the ever so subtle presence of coronary disease and how it may present itself in women...

Addressing the Drug Price Crisis

Blog Summary

As the founder and co-chair of the House Prescription Drug Task Force — the only group of Members of Congress dedicated to addressing the drug price crisis — I am committed to advancing legislative and regulatory solutions to lower the cost of prescription drugs. Before I signed the pledge, I was already working to make medications, including multiple sclerosis medications, more affordable. We have made many strides in research and treatment, but an unaffordable drug is 100 percent ineffective. The National MS Society is a strong ally in addressing the problems of accessing medications, including rising drug prices. With nearly a 400 percent increase in the price of multiple sclerosis medications from 2004 to today, the MS Society’s initiative to make medications accessible comes at a critical time. Rising prices are about more than just one CEO, one drug manufacturer, or one drug.  Across the board we are seeing increases that put treatment out of reach of too many...

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...

MS State Action Day: Policy up close and personal

Blog Summary

My husband Miguel was diagnosed with MS in 1994, and as you know, much of our time is spent dealing with all the daily issues of MS. So, attending the MS State Action Day in New Mexico last month was a wonderful opportunity and privilege. It was great to be among friends and allies, doing something positive for people affected by this disease. Our group had the opportunity to sit in for the MS proclamation in both chambers – of course we sat up front and center with our orange scarfs and ties. I know how important it is for our legislators to see what MS looks like. It affects people in varying ways, and, “a picture speaks a thousand words.”

A “New Year” as an MS Activist

Blog Summary

When I was a kid, I questioned everything! You name it, I wanted to know about it. I didn't see anything wrong with wanting to know more and more and more and even more than that. Listening to adults debate about one thing or another was the greatest experience in the world. Adults didn’t always want me listening in on their conversations – but I found my ways – whether hiding under the dining room table or sneaking behind the stairway banister.   You’re probably wondering what this has to do with the New Year, MS and being an activist? Well, when I was diagnosed with MS in the summer of 2005 after losing vision in my right eye, I thought my days of wanting to see people, much less talk to them, were over. I was consumed with grief, sadness and depression, and I couldn't seem to shake it. I took a leave of absence from work to cope. I couldn't wrap my head around having MS and what that could possibly mean for the once vibrant, go-getter that everyone had come to know and love. Now I was this...whatever "this" was, and I felt that I had no way of prying myself out of the MS abyss that I had begun to sink into. How do I get back to me: the wife, the mother? That was the million-dollar question that took me nearly 10 years to answer...

We Rally: The Impact of Federal Medical Research Funding

Blog Summary

In September, the U.S. Congress passed a Continuing Resolution to keep the government funded through December 11, 2015, meaning federal agencies and programs receive a 0.2108% across-the-board cut in compliance with the Budget Control Act and Fiscal Year (FY) 2016 budget caps. The goal is to work out a comprehensive budget for FY 2016 before December 11th. This Fall two MS researchers joined forces on Capitol Hill to rally for federal MS research funding. Together they’re sharing their experiences to help us all better understand how the ongoing budget negotiations will affect their work...

Living the American Dream with MS

Blog Summary

As the 47th lieutenant governor of the state of Illinois, a wife, a mother of three and a person diagnosed with multiple sclerosis, I have a very full, but hectic life. I work every hour that I’m awake serving the people of Illinois. My MS journey started in 2010 when I suffered an accident while walking. This fall resulted in subsequent MRI and medical examinations that revealed I had MS. At first, I had the blues — as you know, this is not an easy diagnosis to take. My husband was instrumental in helping me push forward by encouraging me to run for Wheaton City Council and to take a teaching position on top of being a trial attorney. With the support of my family and neurologist, I vowed to never let MS stop me...

Vote down MS

Blog Summary

When I was 7 years old, my mom was diagnosed with relapsing remitting multiple sclerosis, but I never actually realized what was happening to her. I was a young kid with a normal mom who just happened to have MS. However, when I was 15, my mom came home from an appointment with her neurologist, and I finally understood what MS was. For the first time I could remember, my mom’s MS had progressed, and there was no way I could stop it. No one wants to see anyone suffer, but it is especially hard to know your mom struggles every day with a disease that currently has no cure. My mom has always been – and will continue to be – one of the strongest and biggest inspirations of my life, but realizing what she deals with everyday motivated me to do more. I started asking what I could do to ease the burdens my mom faced. I helped more around the house. I let her hold my arm when she felt unstable. But I still couldn’t change my mom’s MS...

#WhenYourParentHasMS You Stand Strong for MS Research

Blog Summary

From a young age, I have been interested in the science behind my mother’s multiple sclerosis diagnosis. I knew that I wanted to be part of the medical community. After many years working in the hospital during my undergraduate career, as an emergency medical technician, as well as shadowing neurosurgeons and performing research during my master’s program, I chose the bench (research) over bedside (treating patients). At that time, a majority of therapies targeted symptoms, not the source, of MS, and there were no therapies available to treat progressive MS. So, I have researched neurodegeneration and repair in the brain; specifically myelin repair.  In July, I started as a National MS Society research fellow at Northwestern University Feinberg School of Medicine in the lab of Stephen D. Miller, PhD. In addition to my focus on myelin repair, as a neuroimmunologist, I have the opportunity to pursue selective immune suppression. Ideally, selective immune suppression will lead to decreased (or even absence of) relapses, and myelin repair will mean the ability to repair damage.  As neurodegeneration underlies MS, effective disease-modifying therapies need to both regulate the immune system and promote restoration of neuronal function, including remyelination. Soon, I hope to be able to move from pre-clinical therapeutic trials into patient trials – and improve peoples’ quality of life in all stages of MS...

The Tale of the Concerned Wife and Resistant Husband

Blog Summary

“Do you think a cane would be helpful?” my wife asked after watching me narrowly avoid a fall, and not for the first time. I was diagnosed with primary progressive multiple sclerosis three years earlier, and I was only starting down a path that would, fourteen years later, leave me unable to walk, work, or take care of my own daily needs. I knew the answer to Kim’s question. However, if I responded with a “yes,” she wouldn’t have let the issue rest until I bought a cane, and rightfully so. But I wasn’t ready to wear that scarlet letter in public – to let everyone I might encounter know that I was weak or feeble. My life had been about achievement – physical, academic, professional – and I wanted to remain that guy...

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

Blog Summary

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...