“The carousel never stops turning.” – the TV drama “Grey’s Anatomy” At the 2019 European Patients’ Forum Congress in Brussels, which focused on patient involvement in healthcare, attendees were invited to write down a list of goals they wished to achieve in the next 12 months. After rolling my…
Columns
Biogen, MedRhythms Working on Music Therapy for MS Gait Issues This is music to my ears. Sorry, I couldn’t resist, but I’m a big music fan. Music in my ears really motivates me when I’m exercising. So the idea of using computer-based music therapy to improve someone’s gait has…
This week’s been a relief. I haven’t had to dash to casualty or fallen over in my chair. Nor have I stirred up a ruckus with the health powers that be or bumped into a fellow MSer with an interesting tale. My knockabout personality undoubtedly has…
The National Institutes of Health (NIH) is joining the search for a vaccine to attack the Epstein-Barr virus (EBV). This is a big deal for people with multiple sclerosis, because carrying the virus is thought to play a significant role in the development of MS. In fact,…
Cannabis ‘Highly Effective’ Against MS Symptoms, Some Users Report I would’ve expected many users to report that cannabis has been highly effective at treating MS symptoms, not just some. But comments about this study on the MS News Today Facebook page indicate that people have mixed results. Even…
Living with multiple sclerosis (MS) is hard. I know this is hardly a revelation, especially to those of us who struggle with it on the daily, but I felt like it needed to be said. I was scanning through articles on this site recently, seeing what my fellow…
“Well, this an idea for your next column, John,” my wife, Jane, said, a tad sardonically. At least I thought it was probably sardonic, as there was just a wisp of a razor-thin smirk glimmering at the corners of her eyes. This was because she was wearing a face…
It’s not easy going for a cruise when a scooter and a couple of canes come along for the trip. I’ve done it with success a number of times in the past, and planning helps a lot. My wife and I just returned from our first first cruise since…
Without hesitation, I would say that my bladder and bowel issues have been the hardest symptoms to manage and overcome following my MS diagnosis. It comes down to one thing: the fear of having an accident in public.
PoNS Device for MS-associated Gait Problems Now Available in US One clinical trial showed that MS patients who used the portable neuromodulation stimulator (PoNS) device as part of an exercise program had greater improvements in gait than those using only the exercise program. A second trial showed that those…
My column’s handle is “Fall Down, Get Up Again” because the first piece I wrote for Multiple Sclerosis News Today was titled “A Mountain to Climb with MS — in My Living Room.” That column got me this gig five years ago. It was set in 2012, mind you,…
Remembering My First MS Symptom
What was your first MS symptom? Mine — the one that made me realize something was really wrong — was my inability to squeeze the toothpaste tube with my left hand one morning. Of course, there were earlier hints of trouble. I was unusually tired while attending a business…
Progressive MS Trial Finds Repeat Bone Marrow Infusion Safe, Feasible Two bone marrow transplant studies are reported in this story. The first, a tiny trial of just six people, assessed the safety of this procedure, which involves harvesting cells from their bone marrow, then infusing them into the bloodstream…
Last year, I got the chance to read and review Edith Forbes’ medical memoir, “Tracking a Shadow.” I thought it was an encouraging and thoughtful work, so I contacted her by email for an interview to share her thoughts with readers of this column. Forbes graduated from Stanford…
For the few of you lot lucky enough not to know about intermittent catheterization, it’s shoving a thin bit of plastic up the old (in my case) urethra so that you can pee. I am well aware of how bad plastic is for the planet, but in my open-and-shut…
The High Cost of Living With MS
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…
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…
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