I just got back from ACTRIMS (Americas Committee for the Treatment and Research in MS), where more than 700 MS doctors and researchers shared their results, especially their work aligned with this year’s theme: Environmental Factors, Genetics, and Epigenetics in MS Susceptibility and Clinical Course. This was my first time at ACTRIMS and I found the theme and the talks really compelling. One thing that struck me is the evolving story about how specific things we all encounter in our lives interact with the “cards” (genes) we were dealt at birth. Our genes predispose us to be susceptible to various medical conditions, but that doesn’t mean we will get those conditions. In the case of MS, now there are 200 genetic variants identified that increase a person’s likelihood of getting the disease. I’m struck by how many “moving parts” seem to be involved in whether or not a person gets MS and what their MS experience and course will be...
I spent my twenties angry that my thighs were not thinner and my abs were not flatter. Sometimes I try to calculate how many hours of untapped imagination was wasted in that decade. Time I could have spent exploring my world instead of agonizing over my perfectly healthy body. On my nuttiest days I try to measure out my bad deeds on a "karma scale" to see if the total equals MS in your thirties.
How far away or close are we to our brains — our miraculous life force floating pristine in fluid right behind or eyes? ...
“How long have you been sick?” she asked.
“Oh, I’m not sick,” I responded.
The dental assistant who was taking my information looked puzzled. I continued, “The neurologist who is treating my MS suggested I see the dentist as he specializes in jaw problems which I am having.”
She asked again, “How long have you been sick?” I saw a look of impatience sweep across her face. Then I realized her inquiry was not about my current health but my MS...
“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...
One of my favorite books when I was a kid was a Choose Your Own Adventure book, in which I chased Carmen Sandiego all over the globe. Paragraph by paragraph, I decided what my next move would be in order to find her. It was fun and, without me knowing it at the time, it taught me how to make educated choices and that, based on those choices, there would be some sort of consequence, no matter the outcome.
Having a disease like MS is a lot like a Choose Your Own Adventure book. My entire day is filled with important decisions to make that will carry a great impact, even lasting into the next few days. For example, have you ever spent 20-30 minutes deciding what outfit to wear? No, not because you want to keep up with your trendy coworker, avoid wearing the same dress as someone else at a party, or because you think your butt looks big in those pants...
Staying on a diet can be tough even under the best of conditions — which holiday gatherings of family and friends definitely aren’t. But there are ways to stay strong. Following are some tips that may help you steer toward healthier holiday eating...
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...