Columns

“Without leaps of imagination, or dreaming, we lose the excitement of possibilities. Dreaming, after all, is a form of planning.” ― Gloria Steinem For as long as I can remember, my father has always had a saying: “Perfect planning prevents piss-poor performance.” Much to my husband’s frustration, though, I’m still…

OK, I know I look silly wearing this — maybe even scary — but the Father’s Day gift I received from my son and his family is really cool, especially for someone with multiple sclerosis. Just in time for the hot days of summer, I now have a…

In poker, a tell refers to a change in an opponent’s behavior or demeanor that may offer clues about the cards they’re holding. This could be a facial movement, an unusual breathing rhythm, an unconscious shift in body position, or a strange monetary bet. Recognizing a player’s tells may help…

“A holiday is an opportunity to journey within.” — Prabhas Last week was only my second weeklong holiday since my relapsing-remitting MS diagnosis in 2017. My husband and I have had weekend getaways here and there, mainly to visit family. Of course, COVID-19 has placed a huge restriction…

aHSCT, Stem Cell Therapy for RRMS, Troubled by Unknowns, Paper Says This research team says more studies are needed before aHSCT should be used for people with MS. But this has been the standard response for years to those who have seen benefits with stem cell transplants. Yet there…

So I’m at my multiple sclerosis (MS) exercise class working out on a sit-down bike. Yes, I know, by their very nature bikes tend to be of the sit-down variety, but for us lot in wheelchairs, these bikes are designed so we can roll up to them and have…

Over the many years I’ve lived with multiple sclerosis (MS), I’ve used several medications to treat my MS symptoms. Some have helped, some haven’t, and some worked at first but then lost their efficacy. I recently returned to three of them that I’d stopped using for various reasons.

If you weren’t aware (I wasn’t), last Friday, June 17, was National Eat Your Vegetables Day. The day wasn’t created to tout any special diet per se, but to increase awareness of the benefits of vegetables in a healthy diet. If you were already aware of those benefits, then…

Imagine this scene: There’s a rowdy crowd of nearly 40,000 people in a rugby stadium with music blaring over the Tannoy speakers. Newfound numbness spreads throughout the majority of your body, and on top of that, you can hardly see. That was the perfect myriad of factors to elicit my…

Vidofludimus Calcium Safely Reduced RRMS Brain Lesions Vidofludimus calcium, also called IMU-838, is an oral therapy designed to reduce the activity of B- and T-cells. These are immune cells believed to be responsible for the inflammation that results in MS damage. In this small study, active lesions — including…

I recently did a little research to write an article reflecting on a photograph of the Library of Celsus. This marvelous piece of architecture was commissioned by a Roman consul named Gaius Julius Aquila as a funerary monument for his father. It was once home to…

Compared with living with multiple sclerosis (MS), the anxiety of what on water (Earth has always struck me as a misnomer as water comprises 71% of our planet’s surface) I’m going to write about next week is but a slight fluttering. Yer, yer, I know; underneath it’s…

It’s a decision most of us with a chronic illness have to make sooner or later: When do we disclose our illness, and to whom, and how do we do it? Thirty-one-year-old Katie Coleman faced that decision not long ago. Coleman has stage 4 kidney cancer, and, in April, she…

When I turned 50 in 2013, I blew out the candles, and bam! I was diagnosed with type 2 diabetes. I started seeing an endocrinologist and a neurologist, taking daily diabetic medications, and testing my blood sugar every day. At that point, I was not physically disabled in any…

I’m heading to the beach with my family soon. Not a resort, or any sort of popular, touristy destination. Far from it, in fact. We like to go to the old family beach house on Florida’s Forgotten Coast, where I went as a child and now want my…

In relapsing-remitting MS, relapses and exacerbations involve a worsening of symptoms or the appearance of new ones for 24 hours or more. My disease baseline has changed many times over the years, but has never returned to how it was before my symptoms began. I’m intrigued by how…

Evusheld Boosts Antibodies Against COVID-19 in Vaccinated Patients Research has shown that the COVID-19 vaccines have been effective for people being treated with disease-modifying therapies, except for those that target B-cells, such as Ocrevus (ocrelizumab), Kesimpta (ofatumumab), and Rituxan (rituximab). If this very small study of 18 people proves…

I’ve just received four intramuscular Botox injections in my right arm to relieve the muscle spasticity that comes with multiple sclerosis. (OK, it wasn’t actually Botox, but Dysport, or abobotulinumtoxinA, another medication derived from the botulinum toxin to block muscle contractions.) And “my right arm is going…

Will your doctor approve you to buy medical marijuana (MMJ)? Two of mine will and one won’t. The doctor who won’t, a primary care physician who works within a medical group, told me it’s the group’s policy. The problem, she explained, is that there are no guidelines. How do you…

FDA Decision on Ublituximab for Relapsing MS Pushed to Year’s End Ublituximab is similar to Ocrevus (ocrelizumab) and Kesimpta (ofatumumab), which also target B-cells, the immune cells that play a role in the inflammatory attacks that harm the central nervous system of people with MS. Each of…

The last few years have been rough for a whole host of reasons, and I think it’s safe to say that most of us in the United States feel utterly lost and burnt out. There’s no shortage of things to be stressed about and afraid of. I feel like…

There is a more heavyweight subject I could inflict on you lot, but let’s put our feet up this week. Even I can do it with the one leg. My wife, Jane, and I celebrated our 30th wedding anniversary last Friday. You’d have thought we’d have planned a big…

After two days — 16 hours of it spent on the road — and 1,104 miles, I hadn’t had a single accident. My bladder control meds must’ve worked. The semiannual trip my wife and I take between Florida’s southwest coast and the suburbs of Washington, D.C. is never…

Like watching a scale tip up and down, I’m constantly assessing how any choices I make could affect how I feel tomorrow, or even later today. Although my multiple sclerosis was as aggressive and unstable as a hurricane in my first few years with it, I’ve found a baseline…

Today’s youth have to accumulate a range of skills. Everything changes so fast. Parents often have no idea what career their kids even want to follow. Do you know what a UX designer is? Me, neither. This latest social change was revealed to me in a recent Guardian article,…

A few weeks ago, my cane mutinied. I’ve been using canes for about 20 years — first one, and then a pair. I’m tough on them and put a lot of weight on them. I take them out in the heat, cold, and rain. I force them to rest on…

The thought of summer approaching both worries and excites me. I’ve always preferred the changing of seasons and fair weather to the height of a season, even before my MS diagnosis. I prefer change and the idea of starting anew, as if it might be a remedy to the…

‘Hidden’ Disabilities Fairly Common at RRMS Diagnosis, Study Finds This headline doesn’t report the full nature of this story. In addition to being “fairly common,” the research concludes that disease-modifying therapies (DMTs) have little effect on these so-called “hidden disabilities.”  I don’t agree with that conclusion. Most of…

Last weekend was a busy one. On Friday, I had to drop my eldest son at school at 5:30 a.m. for a field trip and then pick him up at 11 p.m. A nap wasn’t in the cards, I’m sad to say, and at some point in the evening, I…

In my cooking days, I always had a stock simmering away. Nothing was wasted. What had been frugality spurred on by self-imposed poverty — first as a student, then in the struggling life of a garret writer — later became the general political point of not wasting resources. It hurts…