Severe fatigue, brain fog, unintended weight loss and vision loss were some of the symptoms that would ultimately lead to my diagnosis of relapsing remitting multiple sclerosis (RRMS).
In May 2010 at the age of 18, I was referred by a local neurologist to a specialist at UCSF Medical Center. From the day of my diagnosis, things quickly spiraled out of control. Even with baseline disease modifying therapies (DMTs), I went completely blind in my left eye, could hardly walk, experienced numbness and burning sensations, and was unable to complete a tandem walk (heal to toe) in the doctors' office...
In the fall of 1976, I was a high school freshman. I took a radio class with some upper classmen that included a cute little redhead. She was a junior with beautiful green eyes, a pretty smile and a great laugh.
A few months later we were together on New Year’s Eve, and we shared a short and somewhat surprising kiss at midnight. I had never kissed a girl before. I haven’t kissed any others but her since then. That was January 1, 1977. How many men know the exact date and time of their first kiss?...
About five years ago, I was tucking my son in for bed one night. I turned off the lights, turned on the ceiling fan (it’s a Texas thing) and kneeled near his bed so we could say our prayers.
After we finished, I gave him a hug, told him I loved him and as I stood to walk out, he asked, “Daddy, what are you going to dream about?”...
It’s been a real energy boost to attend this conference and to feel the buzz of 10,000 people talking about the latest groundbreaking MS research. The topic of emerging therapies is near and dear to me, since I work on the research team that sniffs out possible new approaches to treating MS and restoring function.
One of these is the first report from the trial of ibudilast in people with primary progressive or secondary progressive MS. This is an oral compound that has been used in Japan at a lower dose to treat asthma and post-stroke dizziness. It’s being tested to see if it can protect the nervous system from MS damage. In a phase 2 trial involving 255 people, ibudilast was found to slow the rate of brain atrophy (shrinkage) by 48% compared to a placebo. Finding a way to slow brain atrophy, which has been linked to cognitive and physical disability in MS, may significantly slow disease progression. The main side effects were nausea and skin rash...
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 in another article I'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...