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?”...
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...
Three games of volleyball a night is getting a lot tougher than it used to be. I’m not sure if it’s because of my age (40 is just around the corner) or my chronic illness—even five years into my diagnosis, it’s still tough to tell the difference sometimes.
The end of this year marks my fifth anniversary since being diagnosed with multiple sclerosis. I try to think back on those early days and where I thought I’d be at this point. Of course, I’d hoped to be fitter, stronger, more confident in my knowledge of my disease...
In the months that it took for me to get my diagnosis, I became increasingly desperate for one. The 10 months that bridged November 2015 to September 2016 were a source of frustration and confusion. Why wasn't my leg working? Would I ever get feeling back in my left leg? Will I have to use a cane for my entire life? What is wrong with me? While steroid treatment and plasmapheresis treatment brought relief, I was still in search of a final answer. At the end of August, I got my answer. I was diagnosed with multiple sclerosis. The next chapter of my life officially began.
Since my diagnosis, I've been on a program of an aggressive course of treatment that has so far been very successful. I've chronicled the importance of rest and the amazing support that Kate has provided in this crucial part of our fight with MS. Conversations with my neurologist surfaced another important piece to this fight: exercise.
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...
A few weeks ago, I went to a class called “Forget Your Fear & Trust Your Truth – A Personal Growth Workshop” held at Happier Valley Comedy in Hadley, MA by Pam Victor, and it empowered me to unleash my potential and stop holding myself back. Three hours at this workshop learning improvisation fundamentals has changed my perspective on life and MS.
When we first got to the class, we were asked to choose an intention card, and I chose one that said, “Take risks.” I was taking this class because I wanted to challenge myself and to live outside of the safety bubble I had created. After we all introduced ourselves and stated our intentions, we split up into pairs and played our first improvisation game called 1, 2, 3. All we had to do was take turns saying 1, 2 and 3 and if either one of us messed up at all, we both had to raise our arms in the air and shout, “Yay!”..
Greetings from ECTRIMS, the 34th Congress of the European Committee for Treatment and Research in MS. This is a lion of a meeting–the world’s largest gathering of researchers dedicated to MS. One thing I have noticed is how close MS researchers are getting to the real concerns of people affected by this disease.
People with MS have been asking for years about diet–is there a diet that works for MS? Does what you eat matter? The work I’ve seen thus far is beginning to answer these questions (links to the scientific summaries, or abstracts, are provided below)...
The buzzing throughout my arms, hands, legs and feet had not let up for 3 full days. My annual checkup with my neurologist was just a day away, so I figured, what better timing? I practically danced into the office and was so excited to get some answers about this newfound pain.
Enter the man of the hour, and come to find out, it’s… all… in my head? Excuse me?...
In early 2009, I decided to buy a new car.
The previous few years had been a whirlwind of events, including the birth of our first child, big career changes, finishing grad school – all sandwiched in with being diagnosed with multiple sclerosis...
I can still remember the very last time I called to schedule a blood donation. Donating blood was something I used to do regularly—it was a way I could give back.
But, this particular call was the first time I tried to donate after being diagnosed with multiple sclerosis. And that day, I learned a brand new phrase: “permanent deferral.” It’s an odd phrase, really, and full of a harsh finality...
“Don’t spend a lot of time imagining the worst-case scenario. It rarely goes down as you imagine it will, and if by some fluke it does, you will have lived it twice.”
- Michael J. Fox
It’s a punch in the gut to hear “your disease is progressing...”