Do you remember what it felt like to stand atop a skyscraper, strap on your cape, and soar through the clouds? You were invincible. Do you remember?
My little brother and I would race through the house in our Superman pajamas, weaving around furniture and stretching our arms out for optimum speed. We’d lift obstacles with our super strength and untie damsels from railroad tracks and rescue kittens from trees. We’d fight villains with lasers that shot out of our fingertips and overwhelm them with our sweet karate moves.
It's 9 am on a Friday morning as I sit patiently awaiting an IV so I can begin my infusion. I make small talk with the nurses after taking my routine pregnancy test to ensure my heavy-duty medicine doesn't harm my apparent unborn child. Unfazed, I ask Jenny how her daughter is and then look around the room to see if any of the other usual suspects are here. Within a few minutes, I have 115 mL of Tysabri being pumped into my veins that will slow down my overactive immune system for next 30 days. As I sit back to begin two hours of frivolous busy work to pass the time, I can't help but think to myself: This is my new normal.
When I learned that I had multiple sclerosis, it felt as if my whole world came crashing down. I was full of emotions – terrified for what this could mean for my future and angry that I couldn't do anything about it. It took me a good year to shake out all of the ramifications of learning of my incurable illness, but eventually I came to terms with it. This is my new normal...
Life altering events come in various forms. It could be one brief moment, a snapshot in time; or perhaps extend over a week, months or even a year.
Sometimes it’s pretty obvious to recognize; in other instances, it might not fully register or become clear until later...
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...
Think of people that you know who have a habit, condition or lifestyle that has a regular impact on their physical well-being. Runners, yogis, vegetarians, people with allergies, pregnant women. I bet you can think of many, many more. I think of these as sidekicks. My brother and his sidekick, CrossFit. My colleague and her sidekick, veganism. If you have a friend or a loved one with a sidekick, you’re going to know a heck of a lot about it, because you care about that person. Understanding the sidekick is part of your relationship. Sidekicks are often so much a part of a person’s daily life that they come up in conversation all the time.
Well, here’s the thing. My sidekick is MS. It’s something that has an invisible but constant impact on my physical well-being and my state of mind. You can bet that I’m thinking about it for at least part of every day. But even after a few years, I still struggle with how much to say about it...
One of the best parts of writing for the MS Connection blog is reading the comments that readers leave.
Yes, you read that right. Sites like this are some of the few places, it appears, on the internet where the “don’t read the comments” rule doesn’t seem to apply. I read every single comment that is left on here, on my personal blog, and on my social media posts. And I delight in receiving emails and private messages. They’re equal parts heartbreaking and encouraging...
Since I was a child, my mom has always said to me, "thoughts become things – pick the good ones." Whether I was tackling a problem at school or going on a job interview, she would tell me to visualize what the result would be and say out loud what I wanted to have happen (if even to myself). "They're going to hire me," I would say with conviction and soon enough this type of exercise became routine.
What I learned much later was that having a positive, optimistic attitude was powerful. Far more powerful than I even realized. It may not have been the direct cause behind finding a solution or getting a job but it helped build confidence and gave me the strength to fight for what I wanted and to go after it. It allowed me to believe that what I was striving for was possible and I was capable of making it happen...
Walking through the front door of our very old house I was greeted by the alarming smell of hot metal and something burning. As I ran into the kitchen, I discovered the metal was the empty tea kettle, which was now melting down the side of our 1940’s range and hitting a flooring product from the same decade that contained enough asbestos to just smolder rather than ignite. It was this incident that confirmed my husband of several months could not boil water. That was1988.
Things changed with the arrival of our son in 1993 as he quickly picked up the skills of making formula, which requires boiling water. Nothing like a baby to get you acquainted with the kitchen, and – as it turns out – to prepare him for things to come...
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...
Once upon a time, in a land far, far away there was a boy named Michael.
The land was Europe. Frankfurt, Germany, to be exact. It was September 1980 and it was Michael’s first day of kindergarten.
Michael, the youngest of three boys, was excited to finally join his older brothers at school. His mother, Frances, walked proudly with him to Frankfurt Elementary #1...