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Run a Myelin My Shoes

Blog Summary

We are “Run a Myelin My Shoes” (RAMMS), a team of 96 people from 25 U.S. states and 16 nations. 49 of us live with multiple sclerosis (MS); 47 are our support heroes. On October 21, 2018 we came together from every continent across the globe to participate in the Detroit Marathon. This is our story.

“If you had one shot
Or one opportunity
To seize everything you ever wanted
In one moment
Would you capture it?
Or just let it slip?”...
 

Cleats for a Cause

Blog Summary

While some symptoms of MS are visible, often times, they’re not. Symptoms like fatigue, numbness, tingling and mood changes can bring a chorus of, “But you don’t look sick” comments your way. Many celebrities, musicians, actors, athletes and politicians have decided to use their platforms to shine a light on what it means to live with MS...

Never Say Never

Blog Summary

You know the saying, “never say never?” Well, I continually remind myself of this since my diagnosis 13 years ago. First it was, “I will never marry someone in the military or shorter than me.” And then I did both. I have told myself multiple times, “I will never do a marathon,” and I have done Challenge Walk MS (50 miles in 3 days!) twice and recently ran in a marathon relay. It’s so easy to say no to things, especially if the challenge seems too daunting because there is a fear that MS may prevent you from accomplishing something. This fear, in turn, overshadows the possibility that you really can do it...

When You Have MS, Politics is Personal

Blog Summary

Sincelast summer’s failed congressional efforts to repeal many provisions of the 2010 Affordable Care Act (ACA), the hashtag #IAmAPreExistingCondition has peppered countless social media updates. Current and former cancer patients use it on Twitter, Facebook, and Instagram. Asthma sufferers post it, too. Ditto for people with diabetes, mental health issues and heart ailments...

The Heart of Service

Blog Summary

I often divide my life with MS into two parts: BC (Before Chair) and AD (After Disability). I was diagnosed with MS in 1988, the beginning of BC. At the time, I think I was in denial. I dealt with problems as they came up, and I pushed it to the back of my mind. It wasn’t until 1993 when I had a particularly bad exacerbation that AD began. That’s when I went into a wheelchair...

Ending Up in a Wheelchair

Blog Summary

“Not all patients with MS end up in a wheelchair.” I first heard this phrase the day I was diagnosed. “I don’t want to end up in a wheelchair,” is something I soon started telling myself with alarming regularity. The terror of this thought was what got me to the gym, got me giving myself painful injections, got me scared into action. You’ve heard the refrain, you may have said it yourself. It’s no coincidence we all express our fear of decline using identical language: end up in a wheelchair. It’s an unhelpful, toxic mantra that reinforces what society wants us to believe about disability, that it’s a fate worse than death.   The troubling reality of MS is that a wheelchair is not the worst possible outcome. Sadly, advancing disease doesn’t always stop with the loss of mobility. That’s the bad news. The good news is, a wheelchair is not, in fact, the end. Many people live fulfilling lives with the assistance of a chair and other devices. Of course, the best news is that with today’s treatments, many will never require the use of mobility aids, but that’s a headline that already gets a lot of attention. For those who will need one, who happen to ‘end up’ here, the feeling can be one of failure, of being beyond hope, of being cheated of the promise that this wouldn’t happen. MS is full of hard truths. But continuing to push this softer narrative has consequences beyond hurt feelings...

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...