Columns

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,…

Ketamine May Help Treat MS-related Fatigue, Small Pilot Trial Suggests I’m tired — I mean really bushed. Today, despite my daily dose of modafinil, I have to sit and think, “What was I starting to do?” before doing it. (I had to look at a list on my phone…

For an espoused leftie, you might be surprised that I’ve always had the brush of the rugged individualist about me. Not quite Bear Grylls, but grabbing a rucksack and hitching across Canada still counts as my own youthful rite of passage. I was used to doing everything! As…

Do you ever wake up in the middle of the night thinking strange thoughts about your MS and your dog? I did the other night. I’ve written about Joey, my cocker spaniel, a couple of times. For example, there was a column about the adventure of taking him for…

“Take the time you need,” “This too shall pass,” and “You can’t pour from an empty cup” are just a few idioms I have used to encourage others. Strong shoulders carry heavy loads. My shoulders bear the weight of myself and countless others. The DNA of an empath is…

“You look OK to me.” He stood, towering over me, his big belly billowing from his shirt as he straightened up and lifted his chin, glaring down at me over folded arms.  I swallowed. Anxiety rushed through me. What am I going to do? I was desperate…

MSAA Opens ‘COVID-19 and MS Pathfinder’ Online Informative Platform Information about MS and COVID-19 is dynamic and regularly changing. This has been particularly true about how to handle disease-modifying therapies (DMTs). The website mentioned in this story tries to keep up with these changes while covering multiple subjects ranging…

I recently started writer David Sedaris’ MasterClass, and one piece of advice he keeps reiterating is the importance of keeping a diary, a daily record of your doings and dealings in this world. It’s a habit I’ve fallen out of, so I bought a stack of Moleskine cahier journals…

In the U.K., stand-up comedy is currently dead. Like Python’s parrot, it “wouldn’t move if you put 4,000 volts through it!” That’s not strictly true. Our government has just stumped up 1.57 billion pounds ($1.97 billion) to support the arts that were slammed shut by the crisis. Comedy is…

I’d just gotten out of bed the other morning and was headed to the bathroom using just one cane when I tried to step over a dog toy on the floor. I went down slowly onto the carpet, so it was really no big deal. No harm, no foul, but…