Columns

This is the fifth year I’m writing a Christmastime missive about how my MS journey as Santa is going since the disease mortally attacked my immune system. The trouble was that it took doctors ages to work out my diagnosis. Being Santa Claus, no MRI machine…

I’m back in Florida for the next several months, having left cloudy, windy, chilly Maryland for the Gulf Coast. It’s been sunny and in the low 80s for the past few days, and my multiple sclerosis (MS) is feeling just fine. A lot of people with MS avoid the heat,…

As I glance over at the lonesome wheelchair skulking in the shadows of my living room, I recall its arrival like it was yesterday, though it’s been more than four years. My husband, and then carer, had paraded it through the house as if it were a savior, there to…

Worsening of Disability Evident in Older Patients Who Stop DMTs Some neurologists believe that multiple sclerosis (MS) progression slows, or even stops, when people reach their 60s, so they advise patients that there’s no need to continue their disease-modifying therapies (DMTs). Personally, I think a DMT age ceiling is…

I’ve been meaning to do this for a while. My wife, Jane, who’s also my primary MS carer, went away for a few days last week, and with absence making the heart grow fonder and all that, I thought I’d strike — if she came back! Fortunately, she did,…

I thought I finally had this bladder thing licked. After years of urinary urgency and frequency, I’d been doing much better. I was sleeping at least seven hours a night without having to go to the bathroom, and bathroom trips were less frequent in the daytime, too. When traveling…

Vitamin D Deficiency Linked to Early Cognitive Issues in Study I’ve taken a vitamin D supplement for many years because numerous studies have shown a correlation between low vitamin D levels and MS. My levels have been normal for years, and I assume the supplement has helped. Even so,…

I don’t know about you, but last week passed in a blur. I typically enjoy Thanksgiving, but this year, things were a little wonky. My husband’s grandfather passed away a month or so ago, so we weren’t about to ask his grandmother to prepare anything. My mother-in-law and I decided…

Well, there’s a new carer at home, actually, but town sounds so much cooler. Like an old-time Western sheriff! My dear wife, Jane, has taken a few days off to attend an ayurvedic yoga retreat, so I’m without the care of She Who Really Must Be Obeyed. (I’ve…

It was five years ago, Dec. 5, 2016, that I scootered into the office of Dr. Heidi Crayton, my neurologist, and plopped into a soft, brown leather recliner. Day 1 of Round 1 of my Lemtrada (alemtuzumab) infusions was about to begin. I’d prepped for this day: two days…

“Shoes are the quickest way for women to achieve instant metamorphosis.” — Manolo Blahnik As the holidays approach, I’m reminded to be thankful for what I have. I was diagnosed with relapsing-remitting multiple sclerosis (RRMS) at 26 years old, and when I became paralyzed, I thought I’d never…

First Patient Dosed in Phase 1 Trial of IMS001 Therapy IMS001 is an investigational treatment that uses mesenchymal stem cells (MSC) — cells derived from human embryos. Preclinical studies have shown that IMS001 has the ability to stabilize an overactive immune system, as is the case in people with…

“Rock bottom is the end of what wasn’t true enough. Begin again and build something Truer.” — Glennon Doyle The first of our four pregnancy losses were our twin daughters in 2013, which happened nearly halfway through my pregnancy. Three years later, the first symptoms appeared that would eventually would…

Wearable ‘Neural Sleeve’ Counters Foot Drop, Aids Mobility in Study This is a neat concept, described by the manufacturer as a lightweight sleeve on the lower leg that predicts the movement a leg is about to make. Then it sends a signal to the muscles to help lift that…

A few weekends ago, I had what I’ve described as a mini midlife crisis. Things with the kids were a mess, my husband was out of town again (to help with a building project on the family farm), and surrounded by the mess and bother of everyday life, I couldn’t…

So, where was I last week? I was in the midst of writing this column when I was felled overnight by my long-term nemesis: a urinary tract infection (UTI). As usual, I had no idea I had one — but hey, I was ill. I’m sure I’ve banged on…

There are continuing signals that the Epstein-Barr virus (EBV) is a fuel that can spark a multiple sclerosis (MS) fire. EBV is a herpes virus that causes infectious mononucleosis, more commonly known as mono. Sometimes called the “kissing disease” because the virus that causes it is easily spread through saliva,…

Nerve Repair Therapy NVG-291 Safe, Well-tolerated in Healthy People This experimental therapy has a long way to go before it becomes reality. But it’s encouraging that this first step found NVG-291’s side effects to be mild and short-lasting. NVG-291 is designed to promote remyelination by modulating an enzyme called…

I had a great night’s sleep the other night. I fell asleep quickly and slept straight through the night for nearly seven hours. When I got up in the morning, I felt refreshed, which is exceedingly rare these days. Plus, it even happened a few more times in the past…

I want to help in any way I possibly can. My lonely confusion in the early days after being diagnosed with aggressive relapsing-remitting multiple sclerosis was mentally and physically paralyzing. However, this column isn’t about how “Hurricane MS” battered my body. Instead, it’s about why I chose to…

Analysis Finds Acthar Gel Cost-effective for MS Relapses I’ve seen social media posts from people with MS who use Acthar Gel and report that it helps with their spasticity. The gel, which is a shot, not an ointment, prompts the body to creates cortisol, a steroid hormone that helps…

I have to admit, I’ve wheeled down the THC path a few times before. Yes, I know it’s very difficult to stay on the path when under the influence. Luckily, I’ve solved this problem by only imbibing in bed. I say imbibing, because for me, smoking the stuff is…

I’m hurtin’ a little today. I have mild muscle aches, a bit more fatigue than usual, and dragging legs. It could just be a bad MS day, or it could be the result of my COVID-19 booster shot a couple days ago.  I received a third shot of the Moderna…

It is hard to watch the decline in real time. It happens before my very eyes. Like “Groundhog Day,” I wake, I try, and I do. I persevere because that is who I am. I push past the chaos in my body. I don’t see every new pain as…

Mono as Child or Teenager Tied to Risk of MS as Adult in Large Study There’s been a lot of buzz about this study, but I don’t think anyone should be surprised about its results. For years, researchers have suspected a link between the Epstein-Barr virus (EBV) — the…

A friend of mine recently recommended a book to me by the multitalented Brian Doyle called “One Long River of Song.” Doyle, a devout Catholic (though I don’t think you need to be a Christian to appreciate his writing), was an award-winning essayist, poet, and novelist with more than…

Well, that was fun. I’ve got my party hat on from a recent birthday (of course I have one, it’s my trusty trilby! See my avatar above) and have been out and about having a lot of fun. I splurged by spending time with family and friends, ’cause…

I hate the cold. It triggers my bladder and stiffens my legs. When the leaves start to turn in Maryland, I start thinking about the warm weather in Florida. So, I was interested to read research from the University of Geneva that indicates that exposure to cold…

National MS Society Supports Stem Cell Transplant for Select, Aggressive RRMS Bravo! This statement is welcome after the recommendation of National Multiple Sclerosis Society advisers that autologous hematopoietic stem cell transplant, or AHSCT, could be useful for people younger than 50 and recently diagnosed with MS. Now, how long…

As is usually the way with books I put on hold at the library, three of the novels I’ve been looking forward to reading all came in at the same time. (Why does it always happen that way?) I shot through Colson Whitehead’s newest book, “Harlem Shuffle,” in two…