The other night I dreamed I was standing in a military formation when my leg began to twitch with an MS spasm. I couldn’t stay in line. The top sergeant yelled while the other soldiers laughed. Suddenly, the scene shifted to a balance beam, where I desperately tried to…
Columns
Oh, brother, it’s hot! How hot? Well, my thermometer hit “are you kidding me” levels. My experience with primary progressive multiple sclerosis (PPMS) has taught me that an 0.5-degree rise in body temperature is enough to cause a shutdown. Allow me to explain what it’s like when my…
Intermittent Fasting in MS Leads to Immune Cell, Metabolic Changes Although the National MS Society will tell you there is no such thing as an “MS diet,” many people follow various diets that seem to help them. One that’s been around for several years is intermittent fasting. In…
Back in November, I told you all about my decision to start taking vocal lessons with a coach. Well, I’ve been at it for about eight months or so, taking an hour-long lesson every other week, and while I can tell that I’ve made some progress, I’m still not…
It seems to me from my anecdotal observations that a fair number of people living with multiple sclerosis (MS) have a gun. When I wrote about the issue a few years ago, I discovered that more people than I expected had both a gun and MS. Additionally, many…
In my last column, I mentioned that I had an intrathecal baclofen pump. I’d make a bad pun, but I don’t have it in me. Spasticity, spasms, and hyperreflexivity were some of my first symptoms, which steadily got worse as my multiple sclerosis (MS) progressed.
As anyone with chronic illness knows, leaving the house requires planning. There’s much more to think about than what’s visible, especially if you’re relying on public transport. In the days preceding last week’s appointment with my multiple sclerosis (MS) nurse, I was contemplating just how long it’d been since…
Hello, all. It’s been almost a year since I’ve written a column, and I missed connecting with you. I’ve been processing the grief of losing my mother in September 2020, withstanding the challenges of living with multiple sclerosis and chronic pain, and valiantly attempting to find the message…
MS News That Caught My Eye Last Week: ATA188 in Progressive MS, Early Symptoms, Yoga, Rituximab
EMBOLD Study of ATA188 in Progressive MS Is Given Go-ahead Is this another small step toward an MS cure? AT188 is an experimental therapy designed to kill cells infected with the Epstein-Barr virus (EBV). As you probably know, researchers have found a lot of evidence that EBV is connected…
The case of Women’s National Basketball Association star Brittney Griner is an important reminder for all of us who travel internationally with our medications: What you might be able to do in your home country, might not be the case in another. And the penalty could be severe. Griner was…
On Feb. 28, 2021, my wife and I visited the MS clinic where I was diagnosed with primary progressive multiple sclerosis (PPMS). After receiving this life-changing news, I was an emotional wreck. While touring the clinic, I saw a person in a wheelchair go into an exam room.
“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…
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…