MS Connection Blog

Share

Employment and MS

Blog Summary

For many of us, our careers define a large part of our identities. Conversely, an MS diagnosis can put a wrench in how we view and think of ourselves in the workforce. As an unpredictable disease, MS can have varying effects on a person’s ability to work—whether an individual can continue to do the same kind of work, or even work at all. Most people are diagnosed with MS between the ages of 20 and 50—their prime career years. At this age, many people have already completed their advanced training and education, and they’ve been working and moving up the career ladder...

My Resolution

Blog Summary

The holidays can be a difficult time for those living with MS. Some of us struggle with travel, or with the reminder that relationship dynamics change, and having to work double time to keep symptoms in check during flu and party seasons.   So with the start of the new year, it’s the perfect time for reflection, to gather ourselves and to perhaps  make some New Year’s resolutions...

I Found a Penny

Blog Summary

It wouldn’t be a life changing event for most people – nothing like winning the lottery. No, just one cent. I found what is one one-hundredth of a dollar on the ground while camping, yet this brought a smile to my face. ​ Let me explain. I had found a penny on the ground 15 years ago, too. I was in a shopping mall, just wasting nervous energy while waiting for my neurology appointment. I’d been diagnosed with MS a few weeks before, and since this disease initially affected my vision, I had taken a leave of absence from my job as an RN in the operating room. I was waiting for the okay to go back to work...

Hope

Blog Summary

When I was 18 years old, I moved out of my parents’ home to live with my non-English speaking uncle, who had recently been diagnosed with primary-progressive multiple sclerosis. Shortly after his diagnosis, my uncle lost his job, his wife divorced him, he could no longer walk without a walker, and he was left feeling weak and hopeless. By being his primary translator at doctor visits, teaching him how to self-administer Copaxone injections, taking him to the ER after adverse reactions to treatment, explaining how one treatment compares to another, and emotionally supporting and encouraging him to never quit fighting, I witnessed firsthand what an individual with MS struggles with daily...

Silence: A Missed Opportunity for Education?

Blog Summary

My mouth is dry. My heart is pounding. I'm beginning to sweat.   No, I'm not about to perform on a stage or give a speech to a roomful of people... and yet... everyone is looking at me—not at him—waiting, expecting me to do something...

Cast Away

Blog Summary

Living with MS sometimes feels like I’m stranded alone on a remote island. But it’s not an escape to “paradise,” as there are no swaying palm trees, crystal blue waters or cool white sandy beaches...

Finding Holiday Gratitude

Blog Summary

We can all find a lot to be thankful for… if we just know where to look.   If you're anything like me, the holidays can be quite stressful. Granted it's supposed to be a very joyous time of year, but the preparation leading up to it can be extremely exhausting..

DMTs and Me

Blog Summary

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...

The Story of Us

Blog Summary

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?...

Dream Big

Blog Summary

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?”...

Promising Emerging Therapies Reported at MSPARIS2017

Blog Summary

​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...