living with MS

A golfing fundraiser held by Sordoni Construction pulled in $40,000 to support comprehensive wellness programs for multiple sclerosis (MS) patients at the Linda E. Cardinale Multiple Sclerosis Center in New Jersey. The funds were raised in September during the 2022 Sordoni Construction Golf Classic. Some 128 golfers, as…

Something is happening to me. All four limbs have become heavier than usual over the past two weeks. My arms and fingers are stiffer and less responsive, and I’ve somehow managed to effect a shuffling gait in my wheelchair. My eyes tire quickly, to the point it seems like I’m…

High adherence to a Mediterranean diet is associated with a lower risk of disability outcomes, as well as reported disease symptoms, in people with multiple sclerosis (MS), a new study shows. The data provide important information for further studies to guide clinical recommendations in MS. The study, “Mediterranean…

Jasmine Iona Brown was diagnosed with multiple sclerosis (MS) in 2003 when she was pregnant with her son. Since then, the 50-year-old Tacoma, Washington, teacher has faced a number of challenges related to her MS diagnosis — fatigue, nerve pain, and cognitive issues. Her family, Brown said, was neither…

GoodRx, in collaboration with Biogen, has made the enrollment form for starting a multiple sclerosis (MS) patient on Vumerity (diroximel fumarate) available on its new “Provider Mode” digital platform. By adding the electronic enrollment form, the company hopes doctors will be able to prescribe their patients Vumerity more…

Just like a surgeon’s prize hand or a ballerina’s plié, my mind has been my most valued asset. That’s been true all my life, through realizing my passion for science, achieving my undergraduate degree in biomedical science, and even keeping myself sane during the dark days of paralysis following…

A voracious reader since childhood, I’ve often lost myself inside fictional worlds — often preferring them to the real one where I’m forced to live. This was especially true when I was diagnosed with multiple sclerosis (MS) almost 18 years ago. When my eyes and ears were focused on…

Neurologists in Colombia agree that sexual dysfunction is burdensome and affects quality of life in major ways for people with multiple sclerosis (MS), but some still don’t ask their patients about it, a survey study reported. Findings also revealed that many neurologists there do not use formal tools…

There are moments in life that have surprising effects on us. I’ve had two. The first was when I was about 9, and my mother informed me that my headmaster had been told I’d disappeared after school. Fair enough in hindsight. I presume she’d phoned the police as well, but…

“I thought it would never happen to me.” I’ve lost count of the number of times I’ve heard someone utter that phrase during my four decades in the news media. Last week, it happened to me. About three years ago, my wife and I bought a condo as a…

Multiple sclerosis (MS) patients who started taking Tysabri (natalizumab) long after their diagnosis were found to have worsened disease progression. But those who began using it earlier showed less aggravated clinical and radiological outcomes of the disease than participants who started treatment later, a study showed. The study,…

While helping me get dressed this morning, my wife handed me a T-shirt from a dresser drawer across the room. It happened to be a shirt commemorating an event from my pre-multiple sclerosis (MS) past. It’s what you might call a “been there, done that, got the T-shirt” kind…

XRHealth‘s virtual reality (VR) software, which provides an immersive three-dimensional environment where patients do repetitive tasks such as popping a balloon with a sword, is safe and feasible for upper limb training among people with multiple sclerosis (MS), according to a recent pilot study. Participants generally felt engaged…

Evaluating a person’s sense of smell may help monitor disease progression in people with multiple sclerosis (MS), according to a recent study. Almost a third of MS patients studied showed signs of smell loss in clinical evaluations and the degree of impairment correlated with clinical measures of disease, such…

There’s a poignant scene in “Forrest Gump” in which the title character and his best friend, Jenny, walk up to the shack where she was raised (and was raped and abused by her drunken father). She stares at the place for a moment and then begins hurling things…

Study Supports MS Disability Test Score as Outcome Measure in Trials Adding two other disability measurements to the commonly used Expanded Disability Status Scale (EDSS) is a good idea, not only for trials but also in everyday patient assessments as well. Measuring our level of disability using only…

The constant light in my cell burned through my eyelids all night. Every night for days now. Prostrate on my back, I couldn’t even turn over to get away from it. Why me? I knew nothing. Wasn’t part of any organization. Had no power. Couldn’t influence anyone. How did I…

After being given the most life-changing, devastating news I’d ever heard — “Mr. De Marzo, you have textbook MS. As a matter of fact, you have PPMS [primary progressive multiple sclerosis].” — the emotions and pictures that ran through my mind were vivid, horrific, angry, and upsetting, to say…

To help ensure that more multiple sclerosis (MS) patients get specialized care, the Michigan Institute for Neurological Disorders (MIND) has opened a physician fellowship program for neurologists. The one-year program is led by Martin Belkin, MD, a neurologist who specializes in MS research and care at MIND, a private…

People with multiple sclerosis (MS) may be more likely to use unhealthy or ineffective coping mechanisms than healthy individuals — and these “maladaptive strategies” are linked to worse mood and a poorer quality of life among patients, according to a new review study. Rather than also relying on active…

Gut Bacteria Are Altered in MS, Linked to Disease Progression Several studies have indicated that the composition of gut bacteria in people with MS is different from that of healthy people. But earlier studies didn’t take into account environmental factors, such as where the study subjects lived or what…

Once upon a time, children, there was a very grumpy bear who kept a low-level, incessant growl going all day. And often, well into the night, too. If his family were lucky, this would only last about a week, but usually it would last a lot longer. He was snappy…

I have to be honest: I haven’t always been honest. I don’t always practice what I preach. My wife called me out on that as we watched an interview I did recently about multiple sclerosis on Montel Williams’ podcast. “You should follow your own advice,” she told me.

The likelihood of survival is about 7.5 times higher for people with multiple sclerosis (MS) who take their disease-modifying treatments as directed compared with those who do not, an analysis of data from U.S. veterans shows. The study, “Impact of Adherence with Disease-Modifying Therapies on All-Cause…

A robot-assisted training program that uses game-like activities to improve upper limb function was met with high satisfaction and enjoyment by people with multiple sclerosis (MS), a small study has found. Most of the participants reported the intervention improved their ability to do day-to-day activities, such as using a…

My eldest son just started high school, which makes me feel both incredibly old and somewhat proud of myself for surviving this long. People have been telling me the teenage years are the hardest, but I have a leg up since I used to be a high school teacher. The…

T-cells Targeting Epstein-Barr Virus at High Levels in MS Patients The evidence of a link between the Epstein-Barr virus (EBV) and multiple sclerosis (MS) continues to mount. The current thinking is that the immune responses that fight EBV may drive the attacks against the myelin nerve coating, which is…

The composition of bacteria in the gut is altered in multiple sclerosis (MS) patients compared with healthy people in the same household, a new study reports. That bacterial composition is affected by disease-modifying therapies and seems to be associated with disease severity. These findings could aid in developing…

Note: The second half of this column details digestive symptoms that may make readers uncomfortable.  In the five years that I’ve written this “irreverent journey with multiple sclerosis (MS),” quoting from my very own bio at the foot of this column, I think I’ve only covered this “quiet”…

I studied psychology in college, but haven’t thought much about Sigmund Freud since then. I did the other night, though. I had a couple of puzzling dreams. Thinking about them after I woke up and putting a little of that college psychology to work, the puzzle became less puzzling. I…