MSPARIS2017 is a remarkable event—it’s a spectacular gathering of thousands of professionals who are dedicated to the treatment and research of MS. I am especially encouraged by the growing number and diversity of presentations on an important topic: wellness strategies.
I saw a poster on the benefits of home stretching for leg spasticity (tightness). Surprisingly, there had not been many previous studies that showed benefits of stretching for spasticity in MS, or any other condition. However, many physical therapists teach stretching to treat spasticity. A study from the VA in Portland showed for the first time that one month of stretching effectively decreased the impact of spasticity on daily symptoms and activities. I was happy to see this first study showing the benefit of stretching and that a larger, follow-up study is planned. Details of the study are published and available for everyone (Abstract 899).
Greetings from MSParis2017, the name for this year’s joint ACTRIMS/ECTRIMS (American/European Committee for Treatment and Research in MS) meeting held in Paris, France this week. The content of the meeting is online, and we’ve also created a web hub for MSPARIS2017 to help others keep up with the news.
Today, there was an exciting announcement of top-line results from a clinical trial of ibudilast in people with either primary progressive or secondary progressive MS. Ibudilast is an oral therapy, and I’m proud the Society helped fund this trial. Investigators reported that ibudilast reduced brain shrinkage (atrophy), which has been linked to disability. I’m looking forward to hearing additional details about this study during a presentation on Saturday, and especially what plans might be underway for further testing...
It's true. Traveling with a disability is challenging. Many parts of the world were unfortunately built primarily for people without disabilities with no second thought to those who have trouble getting around. For example, while on our recent trip to Europe, my step-dad Tim, who uses a cane to get around, tried his best to avoid the countless cobblestoned streets and struggled with the long, narrow staircases in many bed and breakfasts.
However, despite inconvenient sidewalks and steps up to old buildings, Tim found his trip much more accessible than he was expecting. That's because, to quote Bob Dylan, "times they are a changing," and the world's view toward accessibility is changing with it. To put it in a more simply, travel is becoming more inclusive to everyone who has the desire. Destinations are finally acknowledging that people of every age and ability, no matter what their physical or mental hurdles are, deserve to get out of their homes and experience new places...
“I am invisible, understand, simply because people refuse to see me.”
-Ralph Ellison, “Invisible Man”
I’m 5 foot 8. Half of my head is shaved. I wear bold makeup and jewelry. I’m hard to miss. And yet somehow, I have managed to (quite literally) stumble upon the secret to attaining one of the superpowers I’d mentioned inanother articleI'd written late last year: invisibility.
You’re so dramatic. You try too hard. How do you stay so upbeat all the time? Why are you always so negative? You’re crazy.
These are all phrases that I have come to accept as things people will continue to say to me for the rest of my life. They all contradict one another, right? It takes you on a bit of a roller coaster when you start to think about how these could all be said to the same person, and usually within a short period of time.
I was diagnosed with relapsing-remitting multiple sclerosis in February 1996. I was a young 36-year-old at the best time in my career as an athletic trainer. Despite my diagnosis, I kept moving forward and looked to medicine to manage my disease.
At the time, there were only 3 disease-modifying therapies (DMTs) on the market. I tried Avonex and in 2000 added Novantrone, a neoplastic immunosuppressant anti-cancer medication. Unfortunately, neither were all that helpful. But it was then I decided while perhaps I couldn’t be in the lab creating and researching new DMTs, I could lend my body, my broken nervous system and all, to help researchers decode the mystery of MS...
My stomach is churning. My mind racing. I’m in shock. I’m confused.
A doctor has just announced that I have multiple sclerosis. A disease that I know nothing about. Yet apparently it will be part of my life forever – there is no cure...
As fall begins, I can’t help but feel somewhat victorious. I survived – or to be more specific, my MS survived another grueling summer.
When I was younger and living on the East Coast, I had bittersweet relationships with the other three seasons...
This past June, I had the privilege of traveling to Europe with my mom and my stepdad Tim, who was diagnosed with multiple sclerosis in 2000. Tim has common symptoms of MS, including fatigue, sensitivity to temperature and numbness. But the symptoms Tim struggles with the most are cognitive. His difficulty with short term memory, word finding and delayed processing makes everyday activities challenging. Now, take all those problems and go to an entirely new city in a foreign country, and you can imagine how difficult it can be.
When it comes to MS, a lot of time goes into discussing the physical symptoms, although 50% of people living with MS experience cognitive symptoms...
There’s this dress in the back of my closet.
And boy, I used to rock that thing. It was perfect for any occasion. It hugged every curve, it made heads turn, and it made me feel so confident and strong...
In the final years of high school, I wasn’t sure I wanted to go to college. I was emotionally and physically exhausted. AP classes and the seemingly all too encompassing social stresses were trying, but paled in comparison to being diagnosed with multiple sclerosis at 15 years old. I was in a bad place then—stumbling through classes, and suffering from depression and anxiety. I applied to colleges as I thought I should, not expecting much back.
Once I entered college, I wasn’t sure I liked it. But I was aware of the immense privilege I had to be able to access higher education. During my sophomore year, I finally found my footing. I discovered what studies I wanted to pursue, and my grades have reflected my passion, as they seem to get better with each passing quarter...