“So can you lift me up/ And turn these ashes into flames/ ‘Cause I have overcome/ More than words will ever say.” — Kate Voegele My relapsing-remitting multiple sclerosis (RRMS) diagnosis stole my life from me. The reverberations of this unwelcome thunderbolt were astounding. Coming to terms with a…
Columns
MS News That Caught My Eye Last Week: COVID-19, Predicting Progression, Early Treatment, Estriol
Higher COVID-19 Risk Tied to 2 MS Therapies, Even With Vaccination According to this study, people being treated with Ocrevus had 3.6 times the risk of a breakthrough COVID-19 infection compared with people being treated with most other disease-modifying therapies. For those treated with Gilenya, the risk was increased…
The last few months have been a bit stressful, to say the least, and with the thousand and one worries and distractions I was facing, I couldn’t help but think of the opening lines of a William Wordsworth poem: “The world is too much with us; late and…
Monday Unlike Prince, my Monday wasn’t manic. It was barreling along quite sedately until my wife, Jane, casually noted, “Remember, you’ve got a dental appointment on Wednesday morning.” Er, no, I hadn’t remembered. It was somewhat churlish of me, as I’d been waiting for this appointment for nigh on…
This news seems disappointing: A Phase 3 clinical trial of nabiximols — which is available under the brand name Sativex in several countries, including Canada and most of Europe — has failed to meet its primary goal of reducing leg spasticity in people with multiple sclerosis (MS). Nabiximols…
“Thanks, I hate it.” Odd way to begin a column, I know. I suppose I’d better explain myself. That phrase regularly appears in memes and other pop culture media as an expression of dislike for an image or tweet. No one seems to know where or from whom it…
“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…
Fall Down, Can’t Get Up Again
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…