There was no celebrating on the fifth anniversary of my diagnosis of relapsing remitting multiple sclerosis. Instead, I did some reflecting. After the reflecting was over, I made a list of the five ways—one for each year of the disease—MS changed the ways in which I move through and deal with the world...
I was diagnosed with relapsing-remitting MS back in 2014 when the left side of my body lost all mobility, and I was experiencing consistent diplopia in both eyes. After a solid week of Solu Medrol steroids administered via IV, months of pushing forward, and the discovery of nutrition and exercise, I got most of my mobility back. Fast foward 4½ years later, I have been blessed to be relapse-free ever since… until now.
For the last month or so, I have been experiencing new symptoms; more consistent chronic pain, numbness in my hands I didn’t notice until I realized I was using boiling water to wash the dishes, and something a bit scarier. I haven’t been able to formulate complete sentences without tripping over my words for weeks. As someone who works in corporate professionally and just barely gets by thanks to my words, this has been earth shattering...
I wrote a poem when I was graduating from college with my bachelor’s degree. The struggle I had to endure to reach my goal to graduate was rough.
I was diagnosed with relapse-remitting multiple sclerosis in 2006. No doubt, I have had my struggles with the disease. But having MS has taught me how strong I really am. I'm a very goal-oriented person, and if I had let the unpredictable days with this diagnosis stop me from achieving, I wouldn't be true to myself...
One of my takeaways from the 2018 ECTRIMS meeting this week is that there are thousands of researchers around the world working hard to figure out what’s going on in MS—from the very basic biology around what causes the damage to research around options for recovering functions. Some of this applied research is discussed in a blog my colleague Kathy wrote, focusing on the impacts of diet on MS.
I was especially interested in seeing how basic research around what drives brain repair mechanisms is unearthing more and more targets that present new opportunities for finding key molecules or therapies that will promote nervous system repair...
The day before, a professional triathlete gave me this advice: “You must keep moving. You cannot stop.”
I had just completed 11.9 miles of the Pikes Peak Ascent (PPA), a half marathon that ranges from an elevation of 6,300 feet in Manitou Springs, CO to the 14,115 feet summit of Pikes Peak, and reached the Cirque Aid Station. The freezing point temperature I had expected and planned for by this altitude was instead about 70 Fahrenheit. I had been ahead of schedule, but now I risked exceeding the maximum allowed time of 6.5 hours. And I really needed to stop...
The beginning of the New Year brings endless, powerful emotions. Emotions that make you want to become your best self and conquer all of the things that have tried to stop you in the past.
2018 does not just come with new goals for my nutrition, fitness, life experiences, or career; I am going to make 2018 my year where I finally feel more in control of my MS. I know, this is an incredibly bold statement to make, as relapsing remitting MS is an extremely unpredictable disease. But through close monitoring, adhering to my medication and constantly striving to become my healthiest self, I will become stronger than MS!...
It’s nighttime here in London, England after the first full day of ECTRIMS – the European Committee for Treatment and Research in MS. This meeting is the world’s largest gathering of MS researchers in the world, with more than 8,000 clinical and research professionals from across the globe, including many Society-funded researchers and fellows, meeting to share their cutting-edge research findings, to network and collaborate.
It was a jam-packed day of science! For this blog, I want to share my impressions of a staged debate that was focused on the topic of hematopoietic (bone marrow) stem cell transplantation – HSCT for short...
Have you ever tried your hand – or your feet – at the video dance game Dance Dance Revolution, or DDR? I played a few times when my kids went through their DDR phase a few years ago. It was lots of fun, and a great challenge, trying to keep up with the game’s fast-paced, ever-changing dance moves. It required every ounce of concentration I could muster. And, let me tell you, it wasn’t a pretty sight!
I haven’t tried (or even thought about) DDR in years. But my curiosity was piqued when I read this article about how DDR is helping some people with multiple sclerosis work on their balance, coordination, physical fitness and cognition. Researchers at The Ohio State University have mounted a study in which people with relapsing-remitting MS practice DDR a few times a week. One woman quoted in the news report said she’d seen improvement in her symptoms and her overall quality of life since taking part in the study.
I was thrilled to see that another oral therapy for relapsing forms of multiple sclerosis* has been approved by the FDA. With the arrival of Tecfidera (formerly "BG-12"), which should be available by prescription any time now, there are three oral therapies and a total of 10 disease-modifying treatments available in the U.S.
When I was diagnosed in 2001, there were just four therapies available. I take the fact that that number has more than doubled – and that options have expanded to include oral therapies in addition to the injectables – as a sign of the progress science has made in tackling this mysterious disease.
Having a new oral therapy on the market also makes me wonder, as I have several times in the past, whether I would be inclined to trade my daily injections for pills. I have been on the same therapy since I was diagnosed, and I have to say I’ve grown pretty attached to it.
Not that I like the big dents in my legs where the shots I give myself have degraded the underlying tissue. Nor am I a huge fan of the blue bruises on the undersides of my upper arms that mark the spots of those injection sites. And sometimes the shots I give myself in my belly just plain hurt. But I am thankful that I have never had a problem with my medication – and double triple thankful that the stuff, knock on wood, seems to be doing a great job at keeping my disease at bay.
Such a great job, in fact, that I don’t think I’d be inclined to switch to an oral therapy just for the convenience of it. But for all my fellow MSers whose therapies aren’t proving sufficient, and for all those newly diagnosed people who are sorting through their therapeutic options, I’m thrilled that this new pill’s available and that more are on the way.
You can read more about Tecfidera here and about the full array of MS therapies here.
*People with relapsing-remitting MS and people with secondary-progressive MS and progressive-relapsing MS who continue to have relapses