living with MS

I ask a lot of questions. I have to, because I’ve come to realize that I don’t actually know that much. Asking questions (even to myself) is the only solution. Oddly enough, though, learning new things doesn’t completely scratch my itch, as the answers just keep showing me how much…

For older adults with multiple sclerosis (MS) who have highly active disease, most neurologists recommend starting treatment with a high-efficacy therapy, according to a survey study. Neurologists also generally agreed that patients with MS should continue on treatment into the latter decades of life, and that older MS patients…

People with multiple sclerosis (MS) under treatment with Ocrevus (ocrelizumab) commonly experience fluctuations in the severity of their symptoms — but these changes aren’t related to the timing of Ocrevus infusions, a study reports. Although many patients on Ocrevus report a ‘wearing off’ effect between infusions, findings suggest…

Welcome to “MS News Notes,” a column where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Here’s a look at what’s been happening: An ‘inverse vaccine’ trial to treat MS What’s an “inverse vaccine,” you might ask? While traditional vaccines rev up…

Big breath, for my travails below necessitate a catch-up on my story so far. For once, my multiple sclerosis and the myriad joyous comorbidities it’s conferred on me — trigeminal neuralgia, lymphedema, diplopia, spasticity — have given me a break. So have the fellow travelers who’ve…

A question that’s been bothering me lately is this: It seems that more than a few neurologists have a less than optimal understanding of multiple sclerosis (MS). Why is that?  In my four decades of living with MS, and during the several years I’ve written this column…

Using disease-modifying therapies (DMTs) doesn’t reduce fatigue levels in people with multiple sclerosis (MS), a study in Norway suggests. Anxiety and depression were both associated with fatigue, suggesting “there are other underlying causes of fatigue than focal inflammation, on which DMTs have an effect,” the study’s researchers wrote…

Two non-pharmacological rehabilitation approaches — one using a computer program designed to improve working memory and the other involving standardized cognitive-behavioral group sessions — both improved the cognitive function of people with progressive forms of multiple sclerosis (MS), a new study reported. While varying medications often are used as…

I’ve never been one to worry too much about what my purpose in life is. It’s not that I’m incapable of being philosophical, or that I was ever too egotistical to think I needed one. I suppose I just thought that if I had a purpose, it’d work…

People with multiple sclerosis (MS) in the U.S. who have access to a Shields Health Solutions care model pay an average $10 out of pocket each month for their MS treatments, according to the company — which noted that this amount is considerably less than the national average…

Nearly 1 in 5 people on Medicare — a U.S. federal insurance program for people ages 65 and older — travel at least 50 miles (about 80 km) each way to see a neurologist, according to a recent report. However, long distance travel was even more common for people living…

How do you start a column about depression that isn’t, well, depressing? That’s a question for me to answer rather than you lot. If you’re still reading this week’s musings, then so far I’ve done pretty darned good. It was a confluence of events that fortunately involved water. I’d…

Lightning struck at 3 a.m. the other night. The alarm system in my apartment blared — beep, beep, beep — for hours. The dog was barking, the cat was zooming, and I wasn’t sleeping. My stress meter was off the scale. We know that stress can trigger of…

Health technology platform Folia Health is expanding patient-reported data collection in multiple sclerosis (MS), Huntington’s disease (HD), and myasthenia gravis (MG), a move the company hopes will lead to collaborative observational research in the complex disorders, and help transform research and care. As part of this…

People with multiple sclerosis (MS) are about two times more likely to have migraines than healthy people while migraines affect around 24% of people with the neurodegenerative condition, a recent meta-analysis suggests. The mechanisms behind the higher risk in MS, “continue to elude us, and further investigation is warranted…

Octave Bioscience plans to test its precision care program in an observational, real-world study with people with multiple sclerosis (MS). The program, called MS Precision Care Solution, uses blood biomarkers to monitor disease activity alongside MRI scans of the brain and spinal cord. An app tracks…

When I started this column nearly seven years ago, I thought I had a couple years of material in me at best. It’d be a fun experience writing twice a month, getting some thoughts out there into the world and hopefully helping some people in the process. It certainly has…

Recently, I was asked about the design on the left side of my “Chairborne” banner. A friend from my previous occupation humorously noted that in the original graphic, there’s a skull in the center where the wheelchair now resides. I pointed out that in my current state, a wheelchair…

Bowel symptoms go largely unreported among people with multiple sclerosis (MS), mostly due to the unwillingness of patients to talk about their symptoms with their doctors, according to a recent study. However, a self-reported questionnaire called Neurogenic Bowel Dysfunction (NBD) may help screen patients for bowel symptoms without the…

An energy management education program combined with high-intensity exercise during a three-week inpatient rehabilitation program didn’t lead to quality of life gains for multiple sclerosis (MS) patients with fatigue over usual care, but it did offer some benefit. In the months after the program, better cardiorespiratory fitness, gains in…

Octave Bioscience was selected as a finalist in this year’s Innovation by Design Awards in recognition of the platform it created to improve the care of people with multiple sclerosis (MS). Organized by the media brand Fast Company, the awards are touted as some of the most sought-after…

“Being diagnosed later in life is like watching a TV show with a huge plot twist revealed at the end of the season and then rewatching it with this new knowledge, picking up on all the foreshadowing and getting upset that you didn’t see all of it before.” —…

Cionic’s Neural Sleeve, a leg-worn garment designed to boost strength and walking performance in people with conditions such as multiple sclerosis (MS), has won multiple awards in this year’s International Design Excellence Awards program. The event, organized by the Industrial Designers Society of America (IDSA), is touted as one of…

It’s a new week, so it’s time for a new comorbidity. Not content with affecting my brain, spine, and bodily functions, secondary progressive multiple sclerosis is now making my body break down at a cellular level. Make something funny out of that, Connor. Toughie, this one. Maybe later —…

Years before joining the Army crossed my mind, I was a Boy Scout. We learned all sorts of skills, earned merit badges, and, of course, spent lots of time hiking and camping. I have many fond memories of those scouting years, but one lesson I remember in particular was…

Welcome to “MS News Notes,” a column where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Here’s a look at what’s been happening: MS is costly to patients and society People with MS understand how costly the disease can be in terms of…

In 2010, I strolled into a new hospital to meet my new neurologist. In them there far-off days, I was indeed strolling — nay, striding — but it wouldn’t last. I was surrounded by an aura of self-confidence that anyone who’s survived the vicissitudes of nearly three decades of show…

By now, I’m sure you’ve seen the pictures of the wildfires that charred Maui, Hawaii. As I write this, a week after the blaze, The Associated Press reports that more than 100 people have been killed, and the governor expects “scores more.” Some neighborhoods are gone. People literally…

Ten minutes away from the drop zone, we stood up and began the final preparations for the jump. The aircraft flew in anything but a straight line as it turned, banked, and swiftly changed altitude. This unpredictable flying technique was tactically sound, as it made the plane difficult to target,…

Pilates exercise with a relaxation technique improved walking abilities and self-awareness among people with multiple sclerosis (MS), according to a small study. The study, “Impact of Pilates suspension with self-awareness on gait and metacognition in multiple sclerosis: Randomized, single-blinded and parallel-group trial,” was published in…