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,…
Columns
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,…
I glanced at the clock: 15:51. I was relieved. For some reason, I’ve been obsessed with time lately. I’m not sure if it’s due to lockdown anxiety or the ups and downs of my multiple sclerosis, but time has…
NeurologyLive, CMSC Launch Expert Video Series ‘Cure Connections’ This series of 13 videos, designed for healthcare professionals, focuses on diagnosing MS, its psychological impact, managing symptoms, and treatments. Quality-of-life issues, fatigue, and patient support networks also will be discussed. I hope general neurologists will watch it, not just MS…
Last week, my wife and I were back in Bowie, Maryland, for our second shot of the Moderna COVID-19 vaccine. It was a sunny and warm afternoon after a windy, cold, and wet month. We hoped that was a good omen. Nina, the same pharmacist who gave us our…
We often focus on what we don’t have rather than what we do. This doesn’t just apply to our relationships, but to everything: our carers, our careers, our children, our homes, our cars, etc. I often hear people wishing they had more: “I wish…
MS News That Caught My Eye Last Week: COVID-19 Vaccines, Benign and Aggressive MS, Cog Fog, Diet
All of the stories this week are from the ACTRIMS 2021 Forum, an MS research conference held virtually Feb. 25–27. #ACTRIMS2021 – COVID-19 Vaccines Safe for MS Patients, Minimally Affected by DMTs My wife and I received the second shot of the Moderna vaccine last week. (You can read…
This Is What Love Looks Like
Last night, as I was grumpily prowling through a pile of overpriced red and white striped hats looking for one that would fit my fifth grader, I asked myself, Why exactly am I doing this again? I already knew the answer. The next day was Read Across America Day,…
“Ooooops!” Actually, I spit out a shorter, one-syllable word as I took one of the scariest tumbles I’ve had in 40 years of living with MS. But this is a family column. My last scary fall a few years ago happened from a sitting position, and I fell onto…
I am uncomfortable amid ambiguity and unknowns. I find myself searching for rationale when, at times, none exists. I crave clarity yet mostly exist amid the fogginess of MS. I live this way literally and figuratively. My lack of clarity grows with the wait for the COVID-19 vaccine. When I…
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