I always knew that living with multiple sclerosis (MS) was super-expensive, but a new study is a real eye-opener. The study, published in the journal Neurology, puts the annual tab for MS in…
Columns
There is an ongoing difference of opinion between my husband and me regarding my general outlook on life. I consider myself to be a realist, whereas he thinks I tend to err on the side of pessimism. I’m an overthinker. I’ve always felt things incredibly intensely. Interestingly, when I read…
MS News That Caught My Eye Last Week: Deep Brain Stimulation, IMCY-0141, Foralumab, Vumerity
Select Brain Stimulation May Ease MS Tremor, But More Study Needed This is encouraging news for the large group of people with MS who are bothered by some sort of tremor. But the procedure to suppress these tremors isn’t simple. We’re talking about deep brain stimulation, where electrodes are…
It was a moment of clarity. Unfortunately, my attempt at making a bright, clear consommé has for the moment turned into a muddled chowder! Even worse, it was writing this column that started it. I’ve written so often in this column about using my Molift assistive device for transfers…
Do you think about death? I do — a lot. I mean, like almost every day. Don’t get…
“‘Cause I would never break your heart/ I would only rearrange/ All the other working parts will stay in place.” — Biffy Clyro, a Scottish rock band If you’ve spent any time in a hospital, you know that it never gets completely dark. There’s always a light flickering somewhere, a…
No Link Between Herpes Infection and MS Risk in Genetic Study This is interesting because the Epstein-Barr virus is a member of the herpes family, and recently, a major study indicated a link between Epstein-Barr and MS. Yet, the study reported here concludes there is no link between herpes…
In the South, we have a tendency to cram words together to create a single gigantic one, a kind of linguistic Pangea, if you will. The one I’ve been using a lot lately is “usetacould,” a condensed form of the phrases “I used to be able to” and “I once…
Before anyone in the U.S. asks who this Jeremy Clarkson fella is, know that petrol heads in your country know exactly who he is. Indeed, the Brit motoring show “Top Gear,” at its height a few years ago, made him and his fellow presenters stars the world over. It…
I’m marking a big anniversary this month. It’s been four years since I finished the second round of treatment with Lemtrada (alemtuzumab), my final disease-modifying therapy (DMT). That means that, after about 60 monthly blood draws, I’m finished being stuck. Lemtrada is usually a two-phase series of injections, with…
“Serendipity. Look for something, find something else, and realize that what you’ve found is more suited to your needs than what you thought you were looking for.” — Lawrence Block When the world was thrown into lockdown at the dawn of COVID-19, I was already an old hand at functioning…
Use of GA Depot in Treating Progressive MS Given US Patent In the area of MS treatments, one major need is for medications that treat more than just the relapsing form of our disease. GA Depot might help fill that void. The U.S. patent the medication received says it’s…
The week started with a bang, albeit with a hint of underlying anxiety. Friends and former work colleagues gathered during the first days of spring to chat in my sun-lathered back garden in South London. COVID-19 lateral flow tests had all been passed. Previously, we’d spent years working together on…
This column is being published on April 1. When I was in the journalism profession, that was a day we had to be on guard against pranksters who would try to trick us into reporting phony April Fools’ Day news items. So, I need to be very clear about this…
Stem Cell Transplant Gaining Ground as MS Therapy Option This comprehensive look at stem cell transplants by Multiple Sclerosis News Today writer Hawken Miller is one of the best overviews of the possible benefits and dangers and the current status of autologous hematopoietic stem cell transplantation (aHSCT) that…
The Heel That Won’t Heal
The dull throbbing always hits a crescendo “in the wee small hours,” as Mr. Sinatra — or rather his songwriters — so aptly put it. I’m referring to a wound that’s been with me for over a year now. True, it disappeared for a teeny while, when my heel…
I’m changing my mind about MS Awareness Month — at least a little — thanks to “31 Days of MS.” Whether it’s an awareness month or a week, or whether it’s for MS or disabilities in general, I’ve never been a big fan of these types of initiatives. But this…
MS Doctors, Nurses in UK Struggle With Marking Transition to SPMS The issue highlighted in this story isn’t just a problem in the U.K.; it’s a universal MS problem. People with MS often ask how they will know when their illness has transitioned from relapsing to progressive. I respond…
There’s No Such Thing as Perfect
We are a three-cat household because, well, felines are awesome. They’re entertaining and sweet. They love to give cuddles. And they’re fairly self-sufficient — no baths or walks necessary. Just keep food and water in ample supply, and they’re good to go. The only problem? Litter boxes. We have this…
My week is never exactly easy, but it’s much harder for my family. Not only do they have to deal physically with my ever-enlarging lump of flesh, there’s also my verbal diarrhea to contend with. Then last Tuesday, it wasn’t just the verbal kind. Turns out my bowels began to…
You might be wondering why a Yank like me is writing about multiple sclerosis care in the United Kingdom. It’s because a survey caught my eye the other day that I think deserves a closer look. The survey, conducted by the MS Trust and reported by MS News…
“Mirrors don’t lie. They only show a part of truth.” — Lara Biyuts I’ve written about how my reality feels jagged compared with actual reality. I wrote, “The woman looking back at me isn’t whom I perceive myself to be.” I’ve been pondering this recently. The realism of reality With…
MS News That Caught My Eye Last Week: Keto Diet, Milk and MS, Disability Progression, Neural Sleeve
Ketogenic Diet Eases Symptoms, Aids Life Quality in Small RRMS Study This new report says that a ketogenic diet might help people with MS. It’s certainly helped my wife lose weight, but will it help my symptoms? I wondered about that in a recent ‘MS Wire’ column.
It wasn’t an argument; it was a reality check. I was happy, nay, self-indulgent. Within a day, the ol’ stand-up show that I produced at London’s Comedy Store for 30 years had gotten another booking at a countryside marquee just outside the city. I mustn’t disparage, as it’s our…
For the past few months, my wife, Laura, has been following a ketogenic diet, and she’s lost a bunch of weight. But in addition to helping people slim down, the low-carb keto diet may have other benefits, including potentially for those with MS. A small study that will be…
“Most of the time, the greatest rewards come from doing the things that scare you the most. Maybe you’ll get everything you wish for. Maybe you’ll get more than you ever could have imagined. Who knows where life will take you? The road is long, and in the end, the…
#ACTRIMS2022 – Cognitive Training Paired With tDCS Aids Patients A treatment to clear “cog fog” would be welcomed by many people with MS. Over 75% of us are troubled by cognitive problems. In this study, adding painless transcranial direct current stimulation to standard cognitive training improved results when compared…
More Than 50 Shades of Gray
Spring is rapidly approaching. It’s warming up outside. The trees are starting to bloom. And inside our home, I am once again plotting to refresh the place. Out with old decorations, and in with the new! Declutter that closet! Donate the table and chairs that still look great because you…
The Captain and His No. 2
There I was, swinging away in my hoist at 9 p.m., though my swinging London of the 2020s wasn’t only 60 years later, it was also a lot, lot grimmer. My carer and maybe still wife, Jane, stood below in a controlled fury. If nothing else, she might…
“I close my eyes/ Only for a moment then the moment’s gone/ All my dreams pass before my eyes, a curiosity.” — Kansas, “Dust in the Wind” The dark cloud of fatigue first swept through my mind toward the end of 2018. I was no stranger to physical fatigue,…