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In her poem “In Blackwater Woods,” Mary Oliver concludes with 10 breathtaking lines: “To live in this world/ you must be able/ to do three things:/ to love what is mortal;/ to hold it/ against your bones knowing/ your own life depends on it;/ and, when the time comes…

I was listening to a BBC podcast recently titled “The Sinister Hand,” about the history of left-handers. It seems that in medieval times, left-handedness was associated with sorcery. (What wasn’t?) It was only relatively recently that left-handed children were no longer forced to write right-handed — sometimes even…

As comic Rodney Dangerfield might have said, older people with MS “just don’t get no respect.” By older, I mean those of us who are 55 and up. By respect, I mean from researchers and some neurologists. So, as I approach my 73rd birthday, I have to tip my cap…

She held me in a fierce hug. It had been a year since I had held my mother so closely. I rested my chin on her shoulder and silently thanked God. As I looked up, my eyes met hers. I knew what question was coming, along with the weight of…

Recently, I’ve been struggling through an MS flare. I have been numb, mostly from my neck down, which is reminiscent of my first relapse eight years ago. Numb and slightly weak hands make it extremely difficult to draw.

Helper T-cells Drive Transition from RRMS to SPMS, Study Suggests The T-cells referred to in this study, known as CD4+ cells, are believed to play a significant part in central nervous system inflammation. The disease-modifying treatment Lemtrada (alemtuzumab) is designed to destroy these misbehaving T-cells, along with B-cells, so…

Next week, I will be celebrating my second “quarantine birthday,” which is both amazing and sad. I honestly had no idea we’d still be dealing with COVID-19 for more than a year, and what a strange and perplexing time it has been. I think the thing that has hit me…

The trouble with a degenerative disease is that things only get worse. In the long-gone days of my youth, I somehow wrangled myself into being an arts critic. Wizened journalists imparted the lore that a bad show was much easier to write than a rave. Satirical barbs are far more…

Many people with MS avoid Florida. I crave it. My wife and I finally returned here in early March, escaping dreary, rainy, and windy Maryland after we received our COVID-19 vaccines. Since we arrived, the weather has been wonderful, with few clouds and temperatures warm enough for swimming outdoors. Swimming,…

Many believe pain and suffering are interchangeable. While they can and often do coexist, one is not reliant on the other. Pain can occur with or without suffering, and the inverse is true. Physiological, psychological, and psychosocial factors influence our experience with each. The meanings and relationships of these three…

“Take a breath and give one away.” — Marisa Peer Recently, I started doing guided meditation by Marisa Peer, a rapid transformational therapy trainer and best-selling author. Her meditations are freely available on Spotify and cover a range of topics to…

Retinal Layer Thickness May Predict MS Progression, Relapses We all know how unpredictable MS is. For some, it progresses very quickly, while for others, it follows a slow progression over many years. Wouldn’t it be nice if we knew the course our disease is likely to follow, right from…

One of the conditions of being released from the hospital a couple of weeks ago was that I had carers come to my home four times a day for six weeks. I realized it was for the best of intentions, but it still felt, albeit deep down, that these…

Where has the time gone? It’s been three years since I completed my second round of Lemtrada (alemtuzumab) infusions. So, it’s time to take another look at where this journey has taken me. Lemtrada is a monoclonal antibody treatment that wipes out rogue B- and T-cells in the…

Sunlight flooded my bedroom. My tired eyes slowly pulled apart. Realization set in: It was Saturday. Yes! I love Saturdays.  As I got out of bed and glanced outside my window, a crazy thought crossed my mind.  “I’m going running.” I hadn’t…

SPMS Patient First to Be Treated With Antibody Given via Nasal Spray How great is this? As someone who gave himself an injection in his thigh for many years and received IV infusions for many more, an MS antibody treatment sprayed into the nose is wonderful news. This approval…

The daffodils are in full bloom. There are leaves on my Japanese red maple tree again. Seeds are going into the garden. Yes, the cruel season known as winter is coming to an end. The world is waking up again, exploding into a riot of color and birdsong otherwise…

If you read last week’s column, you’ll know I’ve just been through hell — which is a pretty big statement for an atheist. Of course, if there is a hell, I’ll be going straight down. To save you the bother of reading it, here’s a précis: A foot wound…

“I’ve had my shots, so I’m protected,” a friend recently told me, referring to the COVID-19 vaccine.  My wife and I also have received our COVID-19 vaccines. More than a month has passed since our second shots of the Moderna vaccine, so we are protected — theoretically. But theory doesn’t…

I am an optimist in a pessimistic world. A fish out of water. I hold hope to ward off messages of defeat. In a world rife with suffering, hope is essential for soul survival. In my world with secondary progressive multiple sclerosis, it has been my saving grace.

It’s nearly the end of MS Awareness Month.  Previously, I spoke about helping out with the 31 Days of MS initiative by MS News Today and its parent company, Bionews, to help raise awareness of MS. As…

Certain Factors Worsen Outcomes in MS Patients With COVID-19 The worse your MS disability is, it seems, the worse the outcome if you’re infected with the novel coronavirus that causes COVID-19. If you’re still debating whether to get a COVID-19 vaccine, this might help you make up your mind.

So, where off Earth have I been? Nothing as adventurous as a space flight, I’m afraid, but a more prosaic litany of mishaps. First, I did crash, but that was from a vicious steroid withdrawal. My body went limp. Later, it would become even limper. A small wound on…

The journal JAMA Neurology recently reported that a 78-year-old man with progressive multiple sclerosis died after being diagnosed with progressive multifocal leukoencephalopathy (PML), a brain disease. The man, diagnosed with MS about 30 years ago, had been treated for two years with Ocrevus (ocrelizumab), and had no previous…

Last updated April 25, 2023 Expectations equal resentment. It’s simple logic, yet profoundly true. Each time I set an expectation for myself or someone else, I set myself up for a potential letdown. Resentment happens as a byproduct of disappointment, despite the best intentions. As my multiple sclerosis (MS)…

“Is this the real life? Is this just fantasy?” The other night I watched the movie “Bohemian Rhapsody,” and seeing the portrayal of the late Queen frontman Freddie Mercury as he faced an HIV/AIDS diagnosis brought my own MS diagnosis…

Ponvory (ponesimod) Approved for Adults With Relapsing Forms of MS Add one more medication to the disease-modifying therapy (DMT) arsenal. Ponvory is a once-a-day pill that aims to reduce immune system activity. It’s similar to Aubagio (teriflunomide), which I used for about two years, and which I believe helped…

For a week, I’ve spent my afternoons painting our enclosed garden. When we built it last spring, the wood was new and lovely, but rain and sun have taken a toll on everything, leaving it dingy and dull. And now that we have a custom-built white shed (courtesy of my…

Lately, I’ve seen a lot of incorrect information on social media about how multiple sclerosis affects our immune system. Some of it seems to be prompted by concerns that MS makes someone more susceptible to COVID-19, or confusion about whether people with MS can safely receive a COVID-19 vaccine. Here…

I failed the complaint challenge. The goal was to go 24 hours without complaining — no complaining about anything. Yet while the objective is commendable, a win is nearly impossible. I’m not much of a complainer, and I still fell short. I’d venture to say that many others would, too,…