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Impressions from ECTRIMS 2019

Blog Summary

It’s so inspiring to walk through hallways packed with thousands of researchers whose sole focus is MS. That’s what ECTRIMS (European Committee for Treatment and Research in MS) meetings are like. This year’s meeting in Stockholm a few weeks ago involved almost 10,000 of us!   I’ve been attending ECTRIMS for many years, and I’m always encouraged by what I see and hear...

Getting Back in the Saddle

Blog Summary

I fell in love with horses as soon as I could sit on one at the age of three. Our next-door neighbor had been diagnosed with ALS, and while he was still able to sit up in a wheelchair, he was taking riding lessons at a therapeutic horsemanship program. It was through these neighbors that I found out that this very special riding program needed volunteers, which of course I was more than ready and willing to start doing. At the age of eighteen after years of volunteering, I was approached by the facility to become a certified instructor. I was honored, but very hesitant, but I accepted and began training for the certification program. Teaching came to me naturally, and I loved it!...

Don't Shed on Me!

Blog Summary

The students in my disability law class were expecting to have a guest speaker that evening. But they were surprised and delighted when not only did two guests enter the classroom, one of them was of the canine persuasion.   I believe the best way to teach the law is for students to see it in action. And that evening, they learned about an organization called “Canine Companions for Independence,” a nonprofit group that trains dogs to assist people with disabilities. As the students observed, Eliza the service dog, was able to help her owner, a wheelchair user, in a variety of ways. Among other things, she retrieved coins and other small objects, opened the door and even pulled her owner’s wheelchair...

One Step at a Time

Blog Summary

When I got diagnosed with MS at the age of 17, I was overcome with so many questions and emotions. I found myself at a fork in the road: I could either let the diagnosis stop me in my tracks and control my life, or I could take it head on with determination, faith and courage, and not let it stop me from living the life I desired. ​ MS can often feel like a daunting obstacle we face daily, but at the end of the day we will conquer it… one moment, one day at a time...

The Balancing Act

Blog Summary

It’s really tricky to find a perfect balance between inspiring and educating others about MS, and feeling that it defines me. One of my favorite things in this whole world is being that beacon of light for those who are still searching—searching for answers; searching for support; searching for some ray of positive hope. I thrive on being that ray of hope to those who are newly diagnosed or veterans of the disease because there is never too much positive energy. There are times, however, where it becomes truly exhausting to be known as “that girl with MS” or have people only ever talk to me about my disease and nothing more...

A Back to School Prayer for Families

Blog Summary

May I have enough energy this year—parents need so much energy to navigate the demands of the school year, without pesky MS fatigue slowing them down.   So, may my fatigue not keep me from my children’s school activities, sporting events and dance recitals. May the hot weather not keep me from game days, or track and field days. May my medical appointments not conflict with those activities or events...

Did I Ever Tell You About Lucy?

Blog Summary

I think it’s time I tell you about the secret that helps keeps me going.   She’s my one constant that I can count on. Just seeing her can change my whole day from bad to good, in an instant...

Redefining MS

Blog Summary

After 25 years with multiple sclerosis, I have re-defined MS as Moronic Situation, Modified Swagger, Magnificent Strength and Motivational Spitfire.   I got these various new perspectives on MS, but it didn’t happen overnight...

Wheelchair Barbie

Blog Summary

Okay, I’ll admit it–on some level I wanted to look like Barbie. Even though I intellectually knew she wasn’t real and didn’t resemble any person I knew, that skinny piece of painted plastic still had the power to make me feel woefully inferior. There was something about her silent perfection that could not help but scream “pretty,” “hip” and “athletic” to me, especially when she was dressed up to go hiking or roller-blading with the ever-hunky Ken. Of course, every child goes through something like this. And because I did not develop MS until well into adulthood, I at least did not have the additional burden of incorporating a cane, a walker or a wheelchair into my developing self-image. That would only have made things more difficult and infinitely more confusing...

Making a Diagnosis of MS

Blog Summary

There is no avoiding it. Seeing a neurologist for evaluation of a diagnosis of MS can be very stressful. However, understanding what is needed to make a diagnosis may, at least in part, ease some of the anxiety.   Even with all the latest electronic and laboratory studies, an MS diagnosis is still one of exclusion. Unlike a positive biopsy for cancer, there is no single finding on history, exam, or diagnostic study that is unique, or only found, in persons with MS. Thus, making a diagnosis of MS remains one of excluding other diseases that can mimic MS. While this may seem easy, a recent paper from two MS centers reported that 1 out of 5 persons sent to the centers with a diagnosis of MS did not have this disease.1 More than 100 MS “look-alikes” have been described, but most are very rare, and only the most common ones are usually looked for. These include illnesses such as diabetes mellitus, lupus, Sjøgren’s disease, migraine with aura, high blood pressure, brain tumors, blood vessel inflammations and infections...

The Importance of Establishing Care

Blog Summary

For the longest time, I never prioritized the quality of care I was receiving because I thought the scope of my care was just the norm. It wasn’t until I connected with the MS community on social media that I realized I could be doing so much more for myself than I already was! I realized something needed to change when I had brought up the pain I was experiencing and was told it was all in my head. I don’t know about you, but that automatically took me out of my safe zone...