MS Connection Blog

Share

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...

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

Blog Summary

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...

Thriving in the Face of Adversity

Blog Summary

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...

Home Modifications: From Falls to Freedom

Blog Summary

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...