Columns

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…

Bravado is lost in the blink of an eye. Self-doubt erodes certitude until we find that our default modus operandi is to refuse. Opportunities, happiness, possibilities, and growth seem to pass. This no-risk mentality brings no reward. Chronic illness is a breeding ground for skepticism. We live in a world…

“Open Circle Chat!”  Have you seen the reality TV series “The Circle”? It was first shown in the U.K. on Channel 4, and there’s now a U.S. version on Netflix. It is well worth a watch.  I started watching it because of the psychological…

FDA Approves Plegridy as Intramuscular Injection for Relapsing MS A common patient complaint about Plegridy has been that its subcutaneous injection procedure results in injection site reactions. This new formulation is delivered into the muscle, rather than under the skin. The needle is longer, but Biogen pharmaceuticals thinks the…

I know quite a few of you are dealing with copious amounts of snow right now, but there is not a speck of white stuff on the ground where I live in Atlanta. And for that, I am grateful. Why? Because I do not like snow. I do not like…

Would I jinx it? In last week’s column “How I’m Staying on Top of MS’ Many ‘Gifts,'” I wrote about being on top of all my MS-induced ancillary symptoms. Wendy, one of my two readers, pointed out that she didn’t want to jinx me. The trouble was that I’d…

My left hand was numb and weak when I was first diagnosed with multiple sclerosis. For years after that, symptoms above my waist seemed just as prevalent as those below it. Yet, there were no tests being used that measured my waist-up disability level — nothing equivalent to the…

I am confident. I am amazing. I am enough.  Don’t worry, I’m not getting big-headed. I say these statements to myself every day. Why? It’s part of a routine I started a few years ago, and it’s safe to say…

Tecfidera Safe and Effective Over Long Term in Children With RRMS, Trial Shows In my view, too little attention has been paid to treating children and teens with MS between the ages of 10 and 18. Though things seem to be improving, only one disease-modifying therapy, Novartis’ Gilenya (fingolimod),…

When I was finally diagnosed with multiple sclerosis in 2009, my first question to my neurologist was, “Will I end up in a wheelchair?” She patted this question back with the generic, “You may, but no one knows the course that anyone’s MS might take.” Later, I learned that late-onset…

A medical website’s headline screamed, “Breakthrough Multiple Sclerosis Vaccine Shows Impressive Results In Study.” The New York Daily News joined in, highlighting a potential “breakthrough” vaccine. Other media outlets also were using similar adjectives earlier this month. Unfortunately, it’s normal media hype. I suspect some of it was was…

Optimism is kryptonite to the fear and doubt I keep inside. I am grateful for my cheerful disposition because it allows me to maintain balance. But balance is not healing. Left alone, those feelings that I fear ultimately fester. I tend to push aside sadness or frustration. I…