Columns

So, yes, I’ve been away for four weeks. Anybody miss me? Well not away as such. There are places with hoists — even a specialist camper van you can hire here in the United Kingdom — but matching that with a profiling bed makes for quite the elusive Venn…

Lately, I’ve been thinking about pain — specifically, how to count my pain. When I was lying on a treatment table while my physical therapist Richard manipulated my shoulder, he asked me to rate my pain, on a scale from one to 10. I’m sure many of you…

Risk of MS Relapse Not Increased by COVID-19 Vaccine, Study Finds This new information about one of the COVID-19 vaccines supports what doctors have been saying all along. So, why do some people continue to believe the vaccines raise the risk of a relapse? In my personal, nonscientific opinion,…

Lia Coryell says she wanted to die. According to The New York Times, after fighting COVID-19 last winter, Coryell 56, was hit with heart and kidney failure, pneumonia, and shingles. This was in addition to living with progressive multiple sclerosis. “I’ve had to fight this really dark demon that…

I watch my multiple sclerosis progress. I see it progress in moments of defeat. I think of it when I fall. I curse it when I break or can’t open things. I grieve over it when my body fails me. I watch as my independence slips away like…

Winston Churchill once wrote, “I pass with relief from the tossing sea of Cause and Theory to the firm ground of Result and Fact.” This very much sums me up as a person. It was also how I felt when I was diagnosed with relapsing-remitting MS 10 months…

I’ve been working on my health this last year or so, trying everything from a vegetarian diet to visiting an acupuncturist to help with muscle tension and headaches. All of it has been just wonderful. But the elephant in the room — the thing I still needed to…

I wish I could walk a mile in my shoes, but even with a new pair, that’s not going to happen. My MS limits me to about 100 steps while using two canes and a functional electrical stimulation device strapped under my left knee. Because walking is so difficult,…

Ocrevus Reduces MS Relapse Risk, But Linked to More Hospitalizations As you can see from the first two paragraphs of this story, these hospitalizations occurred most frequently in older people with MS. Yet, as these researchers point out, the criteria for selecting the people who participated in Ocrevus’ clinical…

I’ve had pee problems for as long as I’ve had multiple sclerosis. Many folks with MS have issues, including urinary urgency, frequency, or both, bladders that don’t empty completely, or streams that don’t start when you need to go. There are medications to treat these problems. The best known…

The light of the television screen illuminates the darkness. I want so much to sleep, but my body has other plans. After a hot shower and multiple medications, my legs continue to dance. The constant ache, twitch, and kick are a rhythmic routine. But my body is tired and…

Trial Will Test Ocrevus on Arm, Hand Function in PPMS A lot of the focus in MS treatment and clinical trials is placed on walking ability. It seems to me that only recently has attention been paid to above-the-waist disabilities. I know that many people with MS have problems…

Christina Applegate, star of classic ’90s films like “Don’t Tell Mom the Babysitter’s Dead” and TV shows like “Married with Children,” announced last week that she had been diagnosed with multiple sclerosis at age 49. She didn’t share much beyond that, only that it’s been “a tough road” since…

Now that a third COVID-19 vaccine shot has been approved in the U.S. for immunocompromised people, and vaccine boosters are expected to be available to the general public sometime after Sept. 20, Walgreens and CVS have lost no time in offering the additional shot to those who qualify.

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…