MS Connection Blog

Share

Nice Bike

Blog Summary

Looking down into my family room from my kitchen table, I noticed my blue, metallic walker with the seat on it had become an end table. Fortunately, it blends in well with the blue décor of the room. It holds the remote, phone, keys, papers, snacks and it’s portable. It has become such a part of the furnishings that I forgot I once used it to get around. Now it is being repurposed as furniture or auxiliary seating. This realization made me a little queasy, because I couldn’t remember when I stopped walking. I know it was a gradual process and I’m assuming that comes from having MS for many years.
 
Signs of the struggle to stay on my feet are all over this house. The wallpaper alongside the door leading from my bedroom into the bath is completely worn away from clutching the frame to steady myself as I made the transition from carpet to tile. Grab bars at all heights and angles now go unused except for the one of three in the powder room, which is perfect for hanging towels...

On the shoulders of giants

Blog Summary

My multiple sclerosis diagnosis came as a total shock. Total shock as in going to the emergency room for a follow-up to a nosebleed and leaving four hours later with Bell's Palsy, a CT scan, contrast and no-contrast MRIs, and a preliminary diagnosis of MS. No kidding, it was that fast. I have two photos in my phone as an odd sort of commemoration. They are of the ER exam room just as I saw it shortly after the doctor left the room. My life changed a few minutes before 12:51pm. At least that's what the timestamp on the photo shows. After hearing the matter-of-fact medical opinion, I sat on the examining table, smartphone in hand, furiously using Google. I wanted to learn more about the two-ton weight that just swung into my gut that left me utterly lost. I could not understand how I could have this chronic illness and display none of the stereotypical symptoms...

Going for Gold

Blog Summary

It was a beautiful spring day. Crisp air and clear skies accompanied me as I jogged through our neighborhood.  Oftentimes, I juggled work ideas in my head during my runs and this one was probably no different. But when it happened, I was actually pondering whether I should take our dog, Jäger, with me on a run the next day. I even remember the exact house I was in front of when my left leg gave out...

Say “YES” To YOU!

Blog Summary

I’ll never forget him in his ill-fitting trench coat and his cartoonish large head towering over us, just a bunch of wide-eyed, snot-covered children at Tonawanda Elementary School. His name was Officer McGruff, the Crime Dog. He pointed his furry finger at us while an accompanying, un-costumed police officer warned us against the dangers of drugs. I looked up to McGruff. We had a bond. We understood each other. I knew this because a year or two earlier, I had won a safety poster drawing contest and was awarded with my very own plush McGruff doll. It may as well have been an official sheriff’s badge and a key to the city. I was now a safety expert. I took everything he stood for to heart. I mean, he had a trench coat and everything!

The MS Handshake

Blog Summary

Out here in Texas there aren’t many fans of the D.C./Virginia sports teams so whenever I wear any Redskins, Nationals or Hokies gear, it stands out.  Last week, while I was at the store, an older man started a conversation with me. “Go Nationals!” I heard him exclaim as he was staring at the Washington Nationals hat I had on...

Dear Scholarship Donor

Blog Summary

It is with eyes full of tears and a heart full of gratitude that I write this letter. I am a 35-year-old mom of two children, Jason and Jocelyn. When they were born, I was working while pursuing a degree in business administration. However, when my youngest was about six months old, I was taking her for a walk when my legs began to feel heavy and I fell. I began a two-year journey of testing and seeing specialists, with no answers until I was diagnosed with multiple sclerosis in 2012. I knew my children were growing up. They were so full of life and I felt like my life was being sucked from me one nerve cell at a time...

A Morning Prayer

Blog Summary

​My nemesis, the alarm clock, is shouting at me, urgently notifying me that it’s time to leap out of bed and go to work for the day. My eyes snap open. I can see! Without thinking at all about it, I contract the appropriate muscles in my side and my arm to slap the snooze button for the fifth time this morning. I have to use the bathroom, but I can hold it and I take a moment to appreciate that fact.   Sunlight is seeping in between the window blinds, slowly illuminating the room with its warm glow. What else can I see? ...

Five Things

Blog Summary

About nine years ago, I was in a meeting at work and the executive in charge declared: “Five things. I can only remember five things at one time.”   He said it with a smile, but I understood the larger theme that he was communicating – keep the presentations brief and our recommendations/solutions as clear and concise as possible. Five things. His words still echo in my thoughts today but for vastly different reasons than what he had originally intended...

Dear Cat

Blog Summary

July 1, 2013   Dear Cat,   Look at you sitting there, tapping your feet and fidgeting with your hands in that cold, grey exam room. You’re moments away from receiving medical confirmation of that little monster that has been haunting you over the last few months, probably years:   You have multiple sclerosis...

Let the Music Heal You

Blog Summary

Icckk!  I don’t like the MRI test. It makes me anxious and claustrophobic. For those who may not be familiar with it, magnetic resonance imaging (MRI) is a noninvasive medical test that helps physicians diagnose and treat medical conditions. The test is an excellent tool for monitoring multiple sclerosis. But if you’ve ever experienced one, you know how anxiety-provoking they can be. Some MRI centers allow patients to bring their own music to listen to while undergoing the test. I do this and it does help relax me. I bring a CD of what I call my “healing music”. I hand it to the technician, and they put it into their computer, hand me earphones that play my music. I still do not like the test, but the music gets me through it...

Myelin repair and stem cells get attention at AAN Meeting

Blog Summary

Tremendous advances in the understanding and treatment of MS were presented last week at the AAN Meeting in Vancouver. One of the areas getting the most attention was myelin repair. Myelin wraps around nerve fibers, like insulation on an electric cord. In MS the myelin is damaged, disrupting electrical signaling and making the nerves more susceptible to damage that leads to progression. Myelin repair is seen as a promising approach for restoring lost function and slowing down – or even stopping – progression.   We have recently come to learn that the brain is full of spare cells waiting to be called into the service of repairing myelin. In early MS, these cells find their way to areas of damage, wrap around nerve fibers and repair myelin. However, as the years go by, they lose this ability. Finding ways to stimulate the brain's ability to repair itself is an area of intense study and several notable presentations were made at last week’s meeting...