living with MS

Perceptions of a medication can predict treatment adherence and persistence — sticking with the same therapy — in people with multiple sclerosis (MS), a prospective observational study found. The findings were the result of a clinical study (NCT02488343) evaluating the profile of adherence to therapy in patients ages…

After last week’s column about my neurologist declaring that I now have secondary progressive MS, a certain ennui has seeped into me. While this isn’t surprising, it’s also surprising, because I’m on the mood-altering drug fluoxetine. OK, fluoxetine is a regular antidepressant, but “mood-altering” sounds so much cooler.

Life is composed of little awakenings. These epiphanies broaden our horizons. Each invites us to become better versions of ourselves. And while not always welcome, most are necessary for growth. I recently flew across the country to the corporate office of Bionews, the company I work for that…

A conversational bot is being developed at the University of Illinois at Urbana-Champaign (UIUC) to promote COVID-19 vaccinations among people with multiple sclerosis (MS) who are hesitant to take the vaccine. The project is meant to provide accessible digital health information about the vaccines to more vulnerable populations…

I challenged myself to run 10 miles in April. I didn’t know at the time how I would make it work, because I was numb from the neck down due to an MS flare. But I was eager to take back control…

Spring is here, a time we’d normally be out and about getting some sun and recharging our souls after a long winter. I certainly look forward to working in the yard, hiking, having outdoor picnics, and taking the occasional road trip. But this isn’t a typical year, is…

Isn’t it just like me to start my column with a physics analogy that is already confusing? Please stick with me, as all will be revealed. My point is that if a black hole is big enough, you might slip through its event horizon without even noticing. There would…

A short film produced for Hispanic/Latinx people who live with multiple sclerosis (MS) improved patients’ understanding of the condition and the effectiveness of treatment, a study found.  “Health communication interventions, like film, have been shown to be effective tools in promoting positive attitudes…

Sometimes it seems as if people with MS are asked to flip a coin to make what’s arguably the most important decision about their treatment: which disease-modifying therapy (DMT) to use. More than 20 DMTs are approved in the U.S., similar to what’s available in the rest of the…

The combined use of generic and disease-specific health-related quality of life (HRQoL) measures gives a clearer representation of the effects of multiple sclerosis on patients’ quality of life and enables a more accurate comparison across countries, a study has found. “The…

In honor of MS Awareness Week, observed in the U.K. April 19–25, the MS Society released results of a survey about the barriers that keep multiple sclerosis patients from sharing their health status. Multiple Sclerosis News Today‘s Mary Chapman reported that a whacking one-third have stayed silent about their diagnosis.

I am the unlikeliest of warriors. Being called one makes me a little uncomfortable. While I appreciate the sentiment, I feel unworthy of the title. A warrior chooses to battle independent of circumstance. I do so because it is my only option. Multiple sclerosis calls me to fight. Perhaps in…

Trigeminal neuralgia is a term used for facial pain associated with damage to the trigeminal nerve, or the 5th cranial nerve — the largest one among the body’s 12 pairs of cranial nerves and one of the most widely distributed nerves in the head. Usually occurring in people older…

Multiple sclerosis (MS) is a disease that is unique to each patient, meaning that no two people experience the exact same disease manifestations. While there are common symptoms that many MS patients share, such as pain and chronic fatigue, some may experience more unusual symptoms. Seven of…

In her poem “In Blackwater Woods,” Mary Oliver concludes with 10 breathtaking lines: “To live in this world/ you must be able/ to do three things:/ to love what is mortal;/ to hold it/ against your bones knowing/ your own life depends on it;/ and, when the time comes…

I was listening to a BBC podcast recently titled “The Sinister Hand,” about the history of left-handers. It seems that in medieval times, left-handedness was associated with sorcery. (What wasn’t?) It was only relatively recently that left-handed children were no longer forced to write right-handed — sometimes even…

As comic Rodney Dangerfield might have said, older people with MS “just don’t get no respect.” By older, I mean those of us who are 55 and up. By respect, I mean from researchers and some neurologists. So, as I approach my 73rd birthday, I have to tip my cap…

She held me in a fierce hug. It had been a year since I had held my mother so closely. I rested my chin on her shoulder and silently thanked God. As I looked up, my eyes met hers. I knew what question was coming, along with the weight of…

An MS Society survey found that about one-third of people with multiple sclerosis (MS) in the U.K. have kept their condition hidden from their partner, family members, employer, or work colleagues. To help mark MS Awareness Week, observed in the U.K. April 19–25, the nonprofit organization released…

Kesimpta (ofatumumab) has been approved in the U.K. as the first self-administered, at-home, B-cell-targeting therapy for people with relapsing forms of multiple sclerosis (MS) and active disease. More specifically, the approval includes patients with either clinically isolated syndrome, relapsing-remitting MS (RRMS), or active secondary progressive MS (SPMS), who have…

The trouble with a degenerative disease is that things only get worse. In the long-gone days of my youth, I somehow wrangled myself into being an arts critic. Wizened journalists imparted the lore that a bad show was much easier to write than a rave. Satirical barbs are far more…

Many people with MS avoid Florida. I crave it. My wife and I finally returned here in early March, escaping dreary, rainy, and windy Maryland after we received our COVID-19 vaccines. Since we arrived, the weather has been wonderful, with few clouds and temperatures warm enough for swimming outdoors. Swimming,…

Many believe pain and suffering are interchangeable. While they can and often do coexist, one is not reliant on the other. Pain can occur with or without suffering, and the inverse is true. Physiological, psychological, and psychosocial factors influence our experience with each. The meanings and relationships of these three…

The MS Trust welcomes adolescents with a connection to multiple sclerosis (MS) to join as reporters for its YouTube channel, the U.K. charity announced. Since its April 2018 launch, MSTV has featured young people with MS or those close to them sharing their experiences and first-hand knowledge through…

Retinal Layer Thickness May Predict MS Progression, Relapses We all know how unpredictable MS is. For some, it progresses very quickly, while for others, it follows a slow progression over many years. Wouldn’t it be nice if we knew the course our disease is likely to follow, right from…

Where has the time gone? It’s been three years since I completed my second round of Lemtrada (alemtuzumab) infusions. So, it’s time to take another look at where this journey has taken me. Lemtrada is a monoclonal antibody treatment that wipes out rogue B- and T-cells in the…

Tecfidera (dimethyl fumarate), Gilenya (fingolimod), and Ocrevus (ocrelizumab) are losing ground to more recent therapies among U.S. multiple sclerosis (MS) patients switching treatment, according to the latest Spherix Global Insights’ report. The launch of MS generics, bioequivalents, and new brands in the U.S. market over the past year has increased…

People who develop multiple sclerosis (MS) as children are more likely to attain lower education levels, earn less in the workplace, and be more reliant on disability benefits later in life, new research shows. These findings were published in JAMA Neurology, in the study, “Long-term Socioeconomic…

Sunlight flooded my bedroom. My tired eyes slowly pulled apart. Realization set in: It was Saturday. Yes! I love Saturdays.  As I got out of bed and glanced outside my window, a crazy thought crossed my mind.  “I’m going running.” I hadn’t…

The daffodils are in full bloom. There are leaves on my Japanese red maple tree again. Seeds are going into the garden. Yes, the cruel season known as winter is coming to an end. The world is waking up again, exploding into a riot of color and birdsong otherwise…