Columns

Eurgh! Poo is what I fear most at the moment. I thought turning this column into a diary was cool. Following the greats, such as John Diamond, who chronicled his cancer to the end, takes me into some strange quarters. In this case, strained ones! Multiple sclerosis (MS) affects egestion,…

For years, some people have warned of a possible connection between multiple sclerosis (MS) and the amalgam fillings many of us have in our teeth. The concern has been that these fillings contain mercury, which can be toxic, especially if they are removed. In large part, these concerns have…

I am often so preoccupied with the daily maintenance of MS that I forget where the disease ends and I begin. It is too easy to lose our identity among the myriad challenges that accompany a chronic disease. I am the queen of juggling chaos, but that often leaves…

“I’m just lazy,” I told myself. “Why can’t I do the things I need to do? I’m so exhausted and in pain all the time, I just want to sleep. Are my MS symptoms getting worse?” My body was driving…

MS Prevalence at Over 2.8 Million Worldwide, Update to Atlas Reports With almost 3 million of us around the world, we’re not really rare, but we’re rare enough that our MS is still a puzzle to many. People seem to know what muscular dystrophy is (probably because of the…

It’s usually best to write with time for reflection. I often feel like a foreign correspondent reporting from the front line of my own bedroom! The shells of multiple sclerosis (MS) explode within me, and I’m suddenly airlifted into new territory. It’s like being yanked from the street troubles in…

We’re moving and I’m stressed. That’s redundant, I know, as moving is simply stress on wheels — which isn’t good for someone with MS. Studies have shown a link between stressful life events and MS exacerbations, known as flares. Researchers, if you’re reading this, please keep a watch on…

Last week, I again started my twice-annual infusion of Rituxan (rituximab). After 384 days without my disease-modifying therapy, my team decided I could no longer wait. In its absence, my symptomology had worsened. Halting progression trumped a pandemic, and with personal protective equipment in place, I begin…

Multiple sclerosis is an unpredictable disease that can fluctuate at any time. It’s difficult to predict something that behaves so unexpectedly, but one thing you can do to feel in control is track your symptoms. Because brain fog and…

National MS Society Launches Survey to Assess Economic Impact of MS We know that managing MS is expensive. It can cost us money out of our pockets and also limit our ability to earn that money. A small survey about this was the subject of my “MS Wire”…

We’re now moving into the sixth month of quarantine, and it’s looking more and more like the world isn’t going to snap back to the way it was before all of this craziness started. I’m starting to think that’s not necessarily a bad thing, because some of the stuff going…

I’ve been a moderator at MS News Today Forums for a while. One of my jobs, besides rejecting the interminable bots that try to become members, is to promote interaction. This is the hard part. The bots are amazingly easy — they are so far away from getting near…

Multiple sclerosis (MS) is expensive. Even with good insurance, those of us living in a country without universal healthcare have significant out-of-pocket costs for our treatments and medications. Some of these costs may not be covered at all. MS can put us into some serious debt, and it happens to…

Many people with multiple sclerosis (MS) struggle with intestinal issues. There is evidence of the link between gut health and MS.  Bloating is a common result of these issues. It’s super annoying and…

COVID-19 Pandemic Had Minimal Emotional Impact in Progressive MS Patients, Survey Finds I beg to differ. I have secondary progressive MS, and COVID-19 has bummed me out. I haven’t been in an exercise room since May. My wife and I haven’t had a meal in a restaurant since late…

There’s always something! As a columnist, that comes in handy, as then I don’t have to think too much. Stop snickering at the back for thinking that I never think. How very dare you? If any of my fellow Brits are reading this, yes, I’m liberally nicking comedy catchphrases. Why…

Labor Day has come and gone here in the U.S. Now, flu season has arrived in the Northern Hemisphere. This isn’t the novel coronavirus we’ve been fighting all year. It’s the regular seasonal flu virus that’s knocking on our door again. Each year, some people with multiple sclerosis (MS)…

I am tired of having multiple sclerosis. I am just so tired of this disease. And you know what? That is OK. Being tired of MS does not negate my gratitude. It does not replace my joy and zest for life. It is granting myself the grace to be honest…

People outside the U.K. might not understand this column, but that’s OK. Not long ago, we had an entire week with temperatures over 30 degrees Celsius (86 F) in most parts of the country. We don’t have air conditioning here in the U.K., because normally it is hot only…

I don’t know about you, but these last few months have been rough. Like, I-want-to-crawl-under-my-weighted-blanket-with-a-hot-water-bottle-clutched-to-my-midsection-and-listen-to-Chopin’s-“Nocturnes”-on-an-endless-loop rough. Life’s just like that sometimes, especially when you have multiple sclerosis. Ever since the pandemic started, things have only gotten more challenging. Now, we have the added stress of illness, working from home (if…

Albert Einstein proved that the faster you go, the less you’ll age compared with those you left at home. This effect, however, is imperceptible unless you have the ability to approach light speed or hang out near the gravity well of a black hole, which is another part of his…

You’re stressed, and Halo may know it. Halo is a new Amazon service the company says can judge how stressed you are, in part by the tone of your voice. The service uses a wristband that connects to a mobile app. A small sensor in the band monitors temperature, heart…

After I received my diagnosis of multiple sclerosis, my nurse handed me a leaflet explaining how to tell those at my workplace I’m “DISabled,” and what that means, and another leaflet explaining how to claim DISability benefits. The thing is,…

Paramagnetic Rim Lesions Showing Promise as Diagnostic Marker of MS About a year ago, researchers at the U.S. National Institutes of Health reported that the presence of chronic active lesions in the brain may provide a clue as to how quickly multiple sclerosis symptoms will progress. They called them…

In June, I wrote a column about accepting I’d have to physically retire from directing and producing my own stand-up stage show, “The Edge.” Now, because of that which cannot be named, the show is also being retired just short of its 30-year anniversary! Our very first…

The U.S. Justice Department has the manufacturer of Copaxone (glatiramer acetate injection) in its crosshairs, and the outcome could have a much greater reach. It appears the case could directly affect the copay help many of us receive for our medications and the patient services some drug companies provide.

Your alarm sounds at 7 a.m.  You grunt, smash the snooze button, and turn over. Ten minutes later, your alarm sounds again.  You smash snooze.  And repeat another five times.  Eventually, you reach for your phone with a…

FDA Approves Kesimpta, B-cell Targeting Therapy for Relapsing MS The U.S. Food and Drug Administration’s approval of Kesimpta (ofatumumab) this month is a pretty big deal. Kesimpta is a once-a-month injectable disease-modifying therapy. There’s nothing else like it, because Kesimpta targets B-cells in the immune system. Until now, only…

I don’t know about you, but most mornings my brain feels like it’s full of hyperactive gerbils. This could be my multiple sclerosis, or it could be pandemic brain fog. Either way, I understand that song by The Police in a brand new (and very real) way these…

Helicopters were whirling in my brain. Turns out, it was a solitary police one. Though it was another hot night, my wife closed my windows in case of a prowler. I’m on the ground floor, after all. It was a dark moment in my life. Another relapse had struck…