NICE Again Says No to Adding Zeposia to Health System for England and Wales Reading this news, I’m again reminded of the major difference between the healthcare system in the U.S. and those in most of the rest of the world. While the systems outside the U.S. provide most…
Columns
A Time for Decision-making
One of my favorite moments in Arthur Miller’s “Death of a Salesman” involves a stolen fountain pen. If you’ve not read — or better yet, seen — the play, I can’t recommend it enough. It’s a story about making it big in business and losing yourself in the process.
For any younger readers, and by that I’m guessing 45 and under, may I present the cartoon character Popeye the Sailor Man. He got himself out of scrapes by downing a can of spinach, which supercharged his muscles. There was none of that nonsense of de-stalking raw young leaves…
My tough day started when Brenda asked, “Why do you use that scooter?” Brenda was sitting behind a desk at the Charlotte County Tax Collector’s Office in Florida, where my wife, Laura, and I hoped that transferring our driver’s licenses from Maryland to Florida would be an easy chore.
I find peace at 36,000 feet. Quasi-calm. My surroundings and I move in unison with little friction. The hum of the Boeing 737 lulls me to sleep. Tranquility is a powerful provocateur when turbulence is your norm, a juxtaposition to the bed of billowy clouds below. As if…
When I started hypnotherapy about five weeks ago, my therapist asked me questions about where I felt I was in my journey. He asked me to rate my anxiety on a scale of 1-10, and I said 9. Candidly, it was…
Fatigue Prevalence Remains High in MS Patients Is this a surprise to anyone who has lived with MS for any period of time? Over the many years since my diagnosis, fatigue has been my second most bothersome symptom. (Trouble walking is the first.) In this survey, researchers write that…
After last week’s column about my neurologist declaring that I now have secondary progressive MS, a certain ennui has seeped into me. While this isn’t surprising, it’s also surprising, because I’m on the mood-altering drug fluoxetine. OK, fluoxetine is a regular antidepressant, but “mood-altering” sounds so much cooler.
Are you being treated with a disease-modifying therapy (DMT) and wondering how it might affect the efficacy of an mRNA-based COVID-19 vaccine? If so, a recent study may provide some clarity. The study, published in Therapeutic Advances in Neurological Disorders, looked at 125 MS patients either being treated with…
Life is composed of little awakenings. These epiphanies broaden our horizons. Each invites us to become better versions of ourselves. And while not always welcome, most are necessary for growth. I recently flew across the country to the corporate office of Bionews, the company I work for that…
I challenged myself to run 10 miles in April. I didn’t know at the time how I would make it work, because I was numb from the neck down due to an MS flare. But I was eager to take back control…
Phase 4 Trial Will Test if Ocrevus Can Prevent MS Onset in RIS Patients Yes, you’re reading this right. This trial aims to see if Ocrevus can stop MS before it’s officially diagnosed — when it may be smoldering and presenting a minimum of MS-like activity. In July, this…
When in Doubt, Make a Mixtape
Spring is here, a time we’d normally be out and about getting some sun and recharging our souls after a long winter. I certainly look forward to working in the yard, hiking, having outdoor picnics, and taking the occasional road trip. But this isn’t a typical year, is…
Isn’t it just like me to start my column with a physics analogy that is already confusing? Please stick with me, as all will be revealed. My point is that if a black hole is big enough, you might slip through its event horizon without even noticing. There would…
Sometimes it seems as if people with MS are asked to flip a coin to make what’s arguably the most important decision about their treatment: which disease-modifying therapy (DMT) to use. More than 20 DMTs are approved in the U.S., similar to what’s available in the rest of the…
After speaking about hypnotherapy recently with a few people I know, I realized that many of them didn’t know that hypnosis can be used to manage stress and anxiety. One person remarked, “What do I need to say to get you to quack like a duck?” Well, it’s not like…
FDA Rejects Under-the-skin Tysabri for Relapsing MS I expect this decision will be a disappointment for those who had hoped to be able to self-administer highly effective Tysabri as a shot rather than an IV infusion. But I switched from Avonex to Tysabri, because after a few years of…
You’ve Got to Hide Your MS Away
In honor of MS Awareness Week, observed in the U.K. April 19–25, the MS Society released results of a survey about the barriers that keep multiple sclerosis patients from sharing their health status. Multiple Sclerosis News Today‘s Mary Chapman reported that a whacking one-third have stayed silent about their diagnosis.
What could the Academy Awards and COVID-19 possibly have in common for people with disabilities? Stay tuned, and I’ll tell you. First, the Academy Awards. The documentary “Crip Camp,” about a summer camp for young adults with disabilities, was up for an Oscar. Its co-director and co-star, Jim LeBrecht,…
I am the unlikeliest of warriors. Being called one makes me a little uncomfortable. While I appreciate the sentiment, I feel unworthy of the title. A warrior chooses to battle independent of circumstance. I do so because it is my only option. Multiple sclerosis calls me to fight. Perhaps in…
I recently wrote about my decision to try hypnotherapy. I’d been feeling out of control over my mental state following a multiple sclerosis flare. I finally admitted that I needed help. I had an initial phone consultation with my…
MS News That Caught My Eye Last Week: COVID-19 and Flares, Hiding MS Status, Blood Proteins, Tysabri
#AANAM – COVID-19 Often Leads to Flares in MS Patients, Survey Finds I’ve read more than a few social media posts from people with MS who are concerned that the COVID-19 vaccines will cause a flare. National MS Association guidelines say the vaccines may cause a temporary, mild fever…
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…
My Own ‘Left Hand of Darkness’
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…
The Value of Looking Ahead
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…
Recommended Posts
- With MS, it’s important to address mental health early in the process
- My journey with MS is unpredictable, yet driven by purpose
- MS study of genetic risk factors shows need for diverse data
- An MS diagnosis hasn’t stopped my world travels
- New European patent covers all dosing regimens of experimental MS therapy