A few months ago, I was sitting in my car in a parking lot, and I saw a car pull into a disabled parking place. No one hung a disability placard on the rearview mirror, and I saw a young man jump out and head for the store.
“Hey, that’s a disabled parking place,” I yelled at him...
As an invisible illness, it’s often difficult to know if someone lives with MS. So, it comes as no surprise that many of us have a connection to MS we may be unaware of.And the odds of our connection have just increased...
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?”...
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...
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...
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...
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...
“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...
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...
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...
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...