Columns

Trial Will Test Mavenclad for Advanced Progressive MS I often think that researchers have forgotten about people whose MS has progressed to an advanced stage. But MS patients who have moved into a wheelchair deserve treatment with a disease-modifying therapy as much as those who are just beginning their…

I have always liked the odd horror movie, the odder the better. I was a bit of a fan of the trash Troma Studio mob, where their tongue was so firmly in their cheek it usually stuck right through it. For you youngsters out there, think the “Sharknado”…

Can I survive without dessert? Can I live without ice cream, chocolate, and fruit pies, or with only a small amount of beef when I want a burger? The other day, my wife decided to start the ketogenic diet to try to lose some weight. I’m a skinny guy, so…

To the person who left the note on my windshield: I wish you would have asked. I would have told you that I have secondary progressive multiple sclerosis, a neurological disease that impairs my ability to walk. My MS has worsened over time and will continue to progress. I can’t…

Risk of Severe COVID-19 Not Raised by Immunosuppressive DMTs Here’s the latest on whether disease-modifying therapies (DMTs) raise the risk of a person having a bad case of COVID-19 if infected with the novel coronavirus. Researchers report here that DMTs don’t increase that risk. But don’t confuse this information…

This week, my sons returned to school. Both are now in middle school, and let me tell you, this freaks me out deeply as a mother. When we adopted them, the younger boy was only beginning kindergarten, and today, I sent him into the unknown hallways of sixth grade. (Granted,…

It’s all happening at once. Yesterday, a box turned up with my new lymphedema wraps, which use compression to help reverse my lymphedema symptoms. I’ve been waiting for the wraps for nearly a month. It turns out I’m such an unusual size that they had to be imported from…

May I vent, please? In the five years that I’ve been writing this column, I don’t think I’ve ever used it to get something off my chest. But I need to today. It’s about an experience I had at a restaurant the other night. My wife and I went…

It’s with a heavy heart that I write this. I don’t want to, but I have to do what’s right. This will be my last column. Lately, things have been crazy busy for me, with a mix of expected events, such as moving to a new home, and a few unexpected…

FDA Greenlights Stem Cells Trial Aiming to Improve Quality of Life I’m pleased every time I see stem cell research being approved. Hopefully, this will move us closer to approval in the U.S. for the use of stem cells as a treatment for MS. In this research, patients are…

I’ve written about trigeminal neuralgia (TN), which entails severe facial pain, many times. Let me count the ways. Please excuse me while I go off and search through my columns. I’ll be a while. Well, it turns out I’ve written specifically about it only three times,…

Is orelabrutinib one of the next big MS therapies? Biogen is betting at least $125 million that it is. Orelabrutinib is an experimental oral BTK inhibitor (BTKi). BTKi’s are designed to selectively block an enzyme that’s important for the activation of B-cells and microglia. Some of those immune cells…

“Change is the only constant in life,” a quote paraphrased from Greek philosopher Heraclitus states. This ancient wisdom still prevails today. Life is in a constant flux. We evolve, we grow, and we shift, and we are never the same. When I suffer, I cling to this knowledge. And…

This year, I’ve been acutely aware that my body isn’t perfect. Sometimes it doesn’t move well. Sometimes it cuts off sensation in my limbs without notice. Sometimes it gets wiped out from fatigue. Sometimes it’s like MS shakes up my head so hard, like a can of soda, that I…

Skin Reactions ‘Frequent’ With Mavenclad, Real-world Study Finds I regularly see people posting on social media about having a rash or itchy skin, or losing hair while taking Mavenclad. Researchers in this study say these side effects aren’t mentioned in the risk management plans for this disease-modifying therapy. Therefore,…

On July 10, I did something I never thought I’d do: I got a tattoo! I’ve always been fascinated by body art, and any time I see someone with ink I admire, I always ask a ton of questions about it. Sure, I ask how much time it took and…

Any British comedy aficionados among you will know “He’s fallen in the water” is the most famous of all the innumerable catchphrases of “The Goon Show.” That show was the root of Monty Python and every bit of the new wave of comedy that swept through our country.

“Do you need help?” The question came from a 30-something woman after I’d finished loading some cartons into the back of my SUV. I automatically replied, “No thanks, all done.” But lifting and loading isn’t an easy job for me. My upper body strength is good, but my legs are…

I sit amid the flood of carpet stain remover. My left leg is elongated as my right leg is at a jackknife. The cool of the fluid penetrates my sweats. Shock dissipates into pain. I try to move, but pain sears down toward my tailbone. I sit in the dark…

I have a weird secret. I’m sure it’s not the norm for someone with a chronic illness to enjoy this as much as I do, but it always occupies my free time: I love medical dramas. They leave me enthralled with their technical and medical jargon, and their portrayal of…

Biogen Strikes Deal for Orelabrutinib, Now in Phase 2 Trial BTK inhibitors, such as orelabrutinib, are designed to selectively block the activity of an enzyme important for the activation of B-cells and microglia. Some of those cells drive the abnormal immune responses that attack the central nervous systems of…

“Look on the bright side.” Someone just said this to me days ago regarding the loss of a very dear friend. The bright side? I demanded to know what the bright side of this situation could be. There was no satiable explanation given in that moment. I am also…

Last month, my brother-in-law finally managed to return to Thailand and his lovely wife. He’d been trapped in the U.K. for over a year due to COVID-19. Thailand has quite rightly imposed a Kafkaesque set of rules about entering the country on an extended immigrant visa. Luckily, we had…

People with MS who are using cannabis take heed: A research letter published in May in JAMA Network Open reports that calls to poison control centers about people intentionally or inadvertently using plant-based or processed cannabis products have been increasing over the past several years. Public health officials are…

I feared becoming disabled more than I feared multiple sclerosis. At the time of my diagnosis, I was moving about well enough. My mobility changed as my disease progressed. My severe foot drop, unsteady gait, and change in speech were impossible to ignore. My prejudice toward the disabled was…

My obsession with numbers has continued since my latest MS relapses, but now I’ve taken it to a whole new level. A few months ago, I explained in a column that my husband had filled our house with clocks after reading “Atomic Habits” by James Clear, which…

Sativex Eased MS Spasticity as an Add-on Therapy A reader in Belgium told me he has used Sativex for a couple months. He reported no dramatic improvements in his symptoms, but he said the spasticity in his right leg decreased, and he was in a much better mood to…

For the last year and a half, my husband and I had been following the high-fat, low-carb ketogenic diet with some success. I lost 25 pounds, and my spouse (as is often the way with men) lost double that. However, a few months ago, I noticed that I was…

Last year, winter never quite arrived, and spring kept springing up before being crushed down again. We imperceptibly melded into summer. Then the autumn leaves hung on, and hung on some more. But these days, would Mr. Sinatra have to get his lyricist to do a rewrite? Some of…

My grandson, John, turned 5 in May, and my granddaughter, Hayden, turned 7 in June. I love being their Poppy, but I wish their Poppy didn’t have MS. I was diagnosed with MS in 1980, just over a year after our son, Geoff, was born. He and our grandkids have…