Columns

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…

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…

I’ve been walking with the Bioness L300 Go for about eight months, so it’s time to update everyone on how things are going. The L300 Go is a functional electrical stimulator (FES) that helps counter my foot drop. MS has damaged the nerve that carries the message telling my…

I grew up sailing the San Francisco Bay. My summers were spent in sailing school. My father’s daughter, I loved being on the water. There was no place more peaceful or exhilarating. That serenity turned to turbulence one cold and foggy day. While speeding downwind, our boat broached. The…

“What was the date of your last relapse?” the neurologist asked while peering over her glasses at me.  I stared back blankly and then shrugged with a sheepish smile. I knew the year but couldn’t remember the exact date because it was seven years ago!…

Ofatumumab Seen as Superior to Aubagio at Lowering Relapse Rates in Phase 3 Trials Ofatumumab is a cancer medication that’s awaiting approval by the U.S. Food and Drug Administration and the European Medicines Agency to treat MS patients. It’s delivered by injection once a month and aims to reduce…

Maybe I should have called this one “Short and Sharp 2.” Yes, I’ve had another relapse, following my last one in May. I can no longer clean my own tail, and the present regime is literally to “s**t the bed!” I’m using a lot of exclamation points here,…

The idea doesn’t seem very appealing to me, but a company is seeking approval from the U.S. Food and Drug Administration (FDA) for a product that might help people with MS walk better by mildly stimulating the tongue. The portable neuromodulation stimulator (PoNS) is a flat…

Smoking and Epstein-Barr Virus Combine to Raise MS Risk, Study Says A number of studies over several years have demonstrated a likely link between the Epstein-Barr virus and MS. Of course, there’s no question about the health risks of smoking. Put the two together, and it looks like double…

Every few days, I go out to our Little Free Library and change the messages on the two side walls, which are covered in chalkboard paint. One of my missives reads: “My ‘summer body’ plans didn’t work out, but I’m killing my reading list. Take that, 2020!” And it’s…

It all started on the hottest day of the year here in the U.K. My phone said it was 99 F. An old friend was coming over, and my youngest son, Jack, had kindly cleared a route to the garden. So, when she arrived, I took the route. We all…

In early July, I wrote a column about Disability Pride Month. It’s not for me, I said. I questioned the word “pride” and asked whether we need a special month to advocate for a more inclusive world. Several people commented on that column — some supported my thoughts, while…

After you get a new diagnosis and are coming to terms with a new way of life, the next part is especially tricky. You have to tell others. “Urgh. I don’t want to tell anyone! Why do I have to?” I’ve had this conversation with myself more than once.

Order Seen in Motor Skills Affected by MS, With Walking Taking First Hit Read this headline carefully. It reports that walking takes the “first hit,” but that doesn’t mean it’s the first MS symptom people experience. My first symptoms involved vision, fatigue, and hand strength. But true to the…

Strap in: This is not going to be a fun one. Even less so for me — though I’m writing this under the sort of drug load that Jack Kerouac and Hunter S. Thompson would have been proud of! Not for fun (or dependence!) but for survival. “Since TN is…

Like others these days, I’m worried about COVID-19. In fact, I’m probably more worried than some. I’m old, I have MS, and I’ve been treated with the disease-modifying therapy Lemtrada (alemtuzumab) — a trifecta of potential trouble. Lemtrada suppresses part of the immune system. It’s one of the…

I am staring at my golden retriever, Abby, as she sleeps on the lawn, the afternoon sun dancing through her fur. Lying so still, she is encapsulated in a golden glow. I glance at her chest and am reassured by its rhythmic rise and fall. Abby is 10, and…

Rose petal confetti — made from the roses my dad had given me a few days before — rained down as the people I cared about most in the world cheered.  “Congratulations!” came from all around as family and friends pulled me in for a hug. My legs,…