“scabulous adj. proud of a scar on your body, which is an autograph signed to you by a world grateful for your continued willingness to play with her, even when you don’t feel like it.” — John Koenig, “The Dictionary of Obscure Sorrows“ I’ve managed to amass quite the…
Columns
Well, dear readers, I took a bit of time off from writing this column, but not by choice. January was an incredibly hectic 31 days, and I spent most of them living with my parents in Florida. Why? Well, because my mother has been dealing with some health issues…
Welcome to “MS News Notes,” a weekly Monday morning 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: Tysabri biosimilar on the horizon Tysabri (natalizumab) is a very effective disease-modifying therapy (DMT) for…
Have you ever heard of an ABLE savings account? I hadn’t until a couple weeks ago. The acronym stands for the Achieving a Better Life Experience Act, a law passed by the U.S. Congress in 2014. It created special savings accounts that allow disabled Americans, including people with…
Summer is one of the cruelest times of year for people with multiple sclerosis (MS). Thanks to Uhthoff’s syndrome, it’s hard to enjoy all the fun that comes with warm temperatures. I don’t seem to sweat anymore (not that it helps much in our high humidity), so I…
Welcome to “MS News Notes,” a weekly Monday morning 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: A protein to restore myelin? I usually don’t like to comment on stories about mouse studies, because…
A recent question on the MS News Today Facebook page generated some buzz about getting a buzz on to treat your multiple sclerosis (MS). The question was, “What helps you the most to manage your daily life with MS?” Many people with MS said the thing that helped…
The other day, my middle child opened the door while I was in the bathroom. If you have children, a surprise visit in what should be a sanctuary isn’t unusual, but in this case, what he said was. He observed me aboard my toilet and shower chair, which progressive…
“You only begin to grasp the import of an event – and its larger implications vis-à-vis your life – long after it has entered into that realm marked ‘memory.’” — Douglas Kennedy, “The Moment“ I am reading my first book since multiple sclerosis (MS) fatigue reared its…
Welcome to “MS News Notes,” where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Here’s a look at what’s been happening: Gilenya alternative The disease-modifying therapy (DMT) Gilenya (fingolimod) has been around since 2010. Now the U.S. Food and Drug Administration has…
As you read this, a group of scientists is doing multiple sclerosis (MS) research high above the earth. Their laboratory is in orbit about 250 miles up, aboard the International Space Station. Working with researchers at the New York Stem Cell Foundation (NYSCF), astronauts have been helping…
Before multiple sclerosis (MS), I was pretty proud of my memory. For the most part, I still am, but like many others with this disease, I now have trouble recalling information. For me, it’s one of the most irritating, (sometimes even infuriating), cognitive issues associated with MS. I…
Welcome to “MS News Notes,” where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Here’s a look at what’s been happening: Could COVID-19 trigger MS? Since the start of the COVID-19 pandemic, there have been scattered reports of people who’ve developed neurological disorders,…
“I was told I’m in a flare-up,” a newly diagnosed person with multiple sclerosis (MS) wrote to a Facebook group the other day. She said the flare-up had been going on “for a while now” and wondered when she could expect it to calm down. After I pondered…
“The secret of change is to focus all of your energy, not on fighting the old, but on building the new.” — Dan Millman I’m now living with multiple chronic illnesses. Lately, time has been rushing past like a ravenous flood, or standing still like a lonesome statue. In…
One of my favorite episodes of “I Love Lucy” is the one where Lucy and Ethel get up to some hijinks (and don’t they always?) in a candy factory. You know the one. At first, the bonbons come down the belt slowly, each one easy to wrap. But…
Welcome to “MS News Notes,” where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Here’s a look at what’s been happening: Tongue stimulator now easier to obtain A Portable Neuromodulation Stimulator (PoNS) is a mouthpiece that mildly stimulates nerves in the tongue that…
The new year is bringing a new disease-modifying therapy (DMT) to the multiple sclerosis (MS) arsenal. Shortly after Christmas, the U.S. Food and Drug Administration (FDA) approved Briumvi (ublituximab), which joins a small group of DMTs that aim to halt MS progression by knocking out certain…
As I’ve probably mentioned before, my wife and I have three boys in grade school. This means that between school events, sports, and play dates, I’m around a lot of kids. Considering I use a wheelchair, my multiple sclerosis (MS) isn’t exactly invisible, so I’m often asked…
My hips have hurt for several years. Right now, it’s just a dull ache. But there have been times when it has been a shooting pain. Hip pain isn’t necessarily connected to your multiple sclerosis (MS), but it could be. It might be caused by alterations in your…
The new year is just a few days away, so if you haven’t already, you might want to start thinking about resolutions, if you’re so inclined. Although I personally don’t bother these days, about half of American adults do, although that number is declining. One study suggests that…
If there’s one thing those of us who have multiple sclerosis (MS) know all too well, it’s that life requires balance. Fellow columnists and I have written about the need to find a happy medium when it comes to mental, physical, and emotional well-being.
The ballerina twirls in the late afternoon light. As if on cue, Tchaikovsky’s “Nutcracker” suite begins to play. I’m lost in the dimly lit ornaments as my mind wanders. I fall into a deep nostalgia. My mind is a montage of Christmases past. My 6-year-old self follows my dad as we…
The holiday season is one of my favorite times of year. Multiple sclerosis (MS), of course, has a way of sucking the joy out of anything, but it can’t have my family’s Christmas. I might miss sleeping in, but our three boys have really brought the magic…
Welcome to “MS News Notes,” where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Here’s a look at what’s been happening: Possible nonmedicinal treatment for fatigue, spasticity, pain Wouldn’t it be nice to find a treatment that helps people with MS handle three…
My condo was hit by Hurricane Ian in October. Less than a month later, it was hit again by Tropical Storm Nicole. I have a dog whose bark is shattering and a cat who likes to bite. The car dealer can’t find the title for the…
Welcome to “MS News Notes,” where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Here’s a look at what’s been happening: Is cost a factor when deciding DMT use? Cost may be the elephant in the room when people with MS are…
This is one of my “nobody ever told me that” columns. I was amazed when I read a comment from one of my “MS Wire” readers recently about brain shrinkage. “I’ve had MS since 2011. I had no idea about brain shrinkage,” she wrote. I guess I shouldn’t have…
I had a glass of wine thrown in my face on the evening of my wedding anniversary. I was taken completely by surprise — well, maybe not completely. After all, the person who threw it has a reputation for that sort of thing. I was pretty irritated, though, because a…
As an adult, it hasn’t been easy for me to get into the Christmas spirit. Planning festivities and buying gifts don’t come naturally to me. Perhaps it’s because adult life never ends, whereas as a student, I had holiday breaks that signified the beginning of the season, allowing me to…