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So, where off Earth have I been? Nothing as adventurous as a space flight, I’m afraid, but a more prosaic litany of mishaps. First, I did crash, but that was from a vicious steroid withdrawal. My body went limp. Later, it would become even limper. A small wound on…

The journal JAMA Neurology recently reported that a 78-year-old man with progressive multiple sclerosis died after being diagnosed with progressive multifocal leukoencephalopathy (PML), a brain disease. The man, diagnosed with MS about 30 years ago, had been treated for two years with Ocrevus (ocrelizumab), and had no previous…

Last updated April 25, 2023 Expectations equal resentment. It’s simple logic, yet profoundly true. Each time I set an expectation for myself or someone else, I set myself up for a potential letdown. Resentment happens as a byproduct of disappointment, despite the best intentions. As my multiple sclerosis (MS)…

“Is this the real life? Is this just fantasy?” The other night I watched the movie “Bohemian Rhapsody,” and seeing the portrayal of the late Queen frontman Freddie Mercury as he faced an HIV/AIDS diagnosis brought my own MS diagnosis…

Ponvory (ponesimod) Approved for Adults With Relapsing Forms of MS Add one more medication to the disease-modifying therapy (DMT) arsenal. Ponvory is a once-a-day pill that aims to reduce immune system activity. It’s similar to Aubagio (teriflunomide), which I used for about two years, and which I believe helped…

For a week, I’ve spent my afternoons painting our enclosed garden. When we built it last spring, the wood was new and lovely, but rain and sun have taken a toll on everything, leaving it dingy and dull. And now that we have a custom-built white shed (courtesy of my…

Lately, I’ve seen a lot of incorrect information on social media about how multiple sclerosis affects our immune system. Some of it seems to be prompted by concerns that MS makes someone more susceptible to COVID-19, or confusion about whether people with MS can safely receive a COVID-19 vaccine. Here…

I failed the complaint challenge. The goal was to go 24 hours without complaining — no complaining about anything. Yet while the objective is commendable, a win is nearly impossible. I’m not much of a complainer, and I still fell short. I’d venture to say that many others would, too,…

I glanced at the clock: 15:51. I was relieved. For some reason, I’ve been obsessed with time lately. I’m not sure if it’s due to lockdown anxiety or the ups and downs of my multiple sclerosis, but time has…

NeurologyLive, CMSC Launch Expert Video Series ‘Cure Connections’ This series of 13 videos, designed for healthcare professionals, focuses on diagnosing MS, its psychological impact, managing symptoms, and treatments. Quality-of-life issues, fatigue, and patient support networks also will be discussed. I hope general neurologists will watch it, not just MS…

Last week, my wife and I were back in Bowie, Maryland, for our second shot of the Moderna COVID-19 vaccine. It was a sunny and warm afternoon after a windy, cold, and wet month. We hoped that was a good omen. Nina, the same pharmacist who gave us our…

We often focus on what we don’t have rather than what we do. This doesn’t just apply to our relationships, but to everything: our carers, our careers, our children, our homes, our cars, etc.  I often hear people wishing they had more:  “I wish…

All of the stories this week are from the ACTRIMS 2021 Forum, an MS research conference held virtually Feb. 25–27. #ACTRIMS2021 – COVID-19 Vaccines Safe for MS Patients, Minimally Affected by DMTs My wife and I received the second shot of the Moderna vaccine last week. (You can read…

Last night, as I was grumpily prowling through a pile of overpriced red and white striped hats looking for one that would fit my fifth grader, I asked myself, Why exactly am I doing this again? I already knew the answer. The next day was Read Across America Day,…

“Ooooops!” Actually, I spit out a shorter, one-syllable word as I took one of the scariest tumbles I’ve had in 40 years of living with MS. But this is a family column. My last scary fall a few years ago happened from a sitting position, and I fell onto…

I am uncomfortable amid ambiguity and unknowns. I find myself searching for rationale when, at times, none exists. I crave clarity yet mostly exist amid the fogginess of MS. I live this way literally and figuratively. My lack of clarity grows with the wait for the COVID-19 vaccine. When I…

Recently, I was given the exceptional honor of finding stories for MS News Today‘s upcoming “31 days of MS“ initiative. I loved the challenge, and used it as an opportunity to catch up with friends I’ve met over the years while doing…

Stories marked #ACTRIMS2021 are by members of the Multiple Sclerosis News Today team, who reported on this annual conference of MS researchers, held virtually this year due to COVID-19. #ACTRIMS2021 – 30 Minutes in Sun Each Day Lowers MS Risk in Children Can it really be this…

“Let’s go for a walk,” my wife, Jane, chirpily suggested. This was a bit of a nightmare. I had to put on trousers. I perhaps cheekily get away with only wearing an apron all day. It makes going to the bathroom so much easier. (A little later in the day…

This is disturbing and, unfortunately, not surprising. More than 50% of people with advanced multiple sclerosis reported they’ve been mistreated by a family member or friend who cares for them, according to the results of a survey published last September by researchers at the University of California, Riverside. Much…

Tingling fluttered down my spine and into my butt.  “What on earth was that?” I thought. I bent my head forward again, and the same thing happened.  “OK, that’s weird.” I sat on our spare…

Drop in PML With Tysabri Use in Sweden Likely Due to Risk Management Plan I’m JCV-positive, so I’m at risk for PML if I’m being treated with Tysabri. And I was treated with Tysabri for seven years without a problem. That, I believe, is because my neurologist carefully followed…

I’ve recently been sucked into watching “Blown Away” on Netflix. If you have no idea what I’m talking about, it’s a reality TV show in which 10 master glass artists compete in 10 challenges to win a $60,000 prize and an artist’s residency at the Corning Museum of Glass…

Ah, timing. It was early Saturday afternoon on Feb. 13, and my wife, Jane, had just flushed the toilet for me. The doorbell rang — my flowers had arrived. An early romantic gesture. On the morning of Valentine’s Day, Jane countered with hers, a bottle of Laphroaig Quarter Cask…

If you’re having trouble paying for your MS medications, you’re not alone. I regularly see social media posts from people whose insurance has changed or whose insurance company has suddenly dropped a medication from its formulary (the list of meds it will pay for). Or, it has decided that you…

Rare – adjective Not occurring very often; uncommon Unusually good or remarkable On Feb. 28, the world will celebrate international Rare Disease Day. A rare disease is one that affects fewer than 200,000 people in the U.S. Almost 7,000 rare or orphan diseases meet the criteria to be considered…

This week, I went to Tokyo, saw elephants up close in Africa, flew over New York, and watched a stage show, all in one day. How was it possible? Virtual reality (VR), of course! Being unable to play badminton in lockdown has forced…

National MS Society Urges DMT Dosing Changes for COVID-19 Vaccinations The National MS Society has revised its COVID-19 vaccine recommendations first issued about a month ago. The guidelines still say the Moderna and Pfizer vaccines are considered safe for people with MS, including those using disease-modifying therapies, or DMTs.

I was 6 years old when British boxer Henry Cooper knocked Cassius Clay on his bottom. (It was that long ago, folks — 1963. This was before Clay’s religious conversion and consequent name change to Muhammad Ali.) Unfortunately, Clay was literally saved by the bell. I remember dashing around…

It’s a good thing my wife, Laura, is persistent. Thanks to her tenacity, we’ve both been able to get our first shots of the Moderna COVID-19 vaccine. According to the pharmacist who gave us our shots, in two weeks we should be about 60% protected from the SARS-CoV-2 virus…