When I first learned that I had multiple sclerosis in late January 2004, the thing I worried about most was losing my mind. No, I’m not referring to stressing out, going bananas, cracking up, going off the deep end, or coming unglued — though all of those were distinct…
Columns
Singing the Bureaucracy Blues
You think getting a chronic illness is as bad as it’s going to get, but then you quickly realize that you’ve been catapulted into a netherworld. There’s no stepping through the back of the wardrobe into Narnia — I’m pretty sure C. S. Lewis didn’t envisage disabled access furniture!…
If you’re a member of the baby boomer generation, or if you just like the music of the 1960s and ’70s, you probably know Paul Simon’s “50 Ways to Leave Your Lover“: “‘The problem is all inside your head,’ she said to me. ‘The answer is easy…
Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “What is Trigeminal Neuralgia?” from May 2, 2018. What causes…
Living with secondary progressive multiple sclerosis is a lesson in discovery. I strive to manage life with MS one day at a time. My disease touches all aspects of my life. One of the elements it affects is intimacy: closeness, affinity, warmth, trust, and mutual affection. Intimacy is friendliness,…
When you’ve lived with multiple sclerosis (MS) for as long as I have, you sometimes forget or block out negative experiences you’ve had over the years. As The Rolling Stones put it, “Time is on my side.” One particular memory seems distant, but…
About 15 disease-modifying therapies (DMTs) are available to treat MS these days. So, choosing which to use can be daunting. I’ve been treated with four DMTs since I was first prescribed Avonex (interferon beta-1a) back in 1996. Each time I’ve switched treatments, my neurologist has suggested a number of…
I have always found group settings to be challenging because of my shy and quiet personality. While I do fine talking to people one-on-one, gatherings of three or more can make me squirm. Years ago, the company I worked for held monthly bonding sessions for…
Non-contrast MRI Effective in Monitoring Progression of MS, Study Shows There’s been increased interest in the risks versus the benefits of using gadolinium to make lesions more visible on an MRI. The U.S. Food and Drug Administration issued an advisory last year raising the level of…
Julian, the doorman at the London Comedy Store, is giving me his biweekly telling off about drinking. It’s biweekly because he and the other regular doorman, Mark, take turns helping me. I’ve known both of them for more than 30 years, though to be fair, in the…
A post in one of the MS social media groups I follow recently asked whether kids can have MS. The writer was worried about her 3-year-old. One commenter replied that her son was diagnosed when he was 9. But, she wrote, his symptoms actually began to appear when he…
Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “Chair yoga” from April 14, 2018.
Visibly Me, Visible MS
Multiple Sclerosis Awareness Month has arrived, lasting throughout the month of March. All things orange and popular hashtags flood social media sites. Awareness months like this have great value, though some may disagree. Awareness months become vessels to engage and encourage individuals and communities to get involved.
Have you ever heard of the word “polypharmacy”? I saw the word for the first time today. It’s generally defined as taking many medications together. There’s been debate over how many is “many,” but a number generally used is five or more. That describes me. I take…
Research finds that a deficiency of B vitamins may play a role in multiple sclerosis (MS) symptoms. On the other hand, supplementation of the vitamins may help. There are eight essential B vitamins: B1, B2, B3, B5, B6, B7, B9, and B12. The large variety can be confusing when…
All of the stories in this week’s column come from the recently held Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) forum, held Feb. 28 to March 2 in Dallas, Texas. #ACTRIMS2019 – Forum Leaders Discuss: ‘Will There Be a Cure for MS?’ A reporter for…
Playing Billy Beane in “Moneyball,” Brad Pitt utters the now famous line, “Adapt or die.” (Warning: The scene linked here has a few naughty words in it.) He’s referencing the use of statistics to create a better baseball team, but I think the saying is true to most…
Minority Report
In the earlier days of my MS, I could still walk a bit. It was not enough to risk the maze of an airport, so I traveled sensibly in a wheelchair and preregistered as a disabled passenger. My then-teenage son reduced the boredom by placing me facing into suitable…
A recent article in The New York Times hit the nail on the head when it comes to describing the world we live in with MS. But the article isn’t about MS. The Times‘ Tessa Miller writes about Crohn’s disease, a type of inflammatory bowel disorder. Like MS, Crohn’s…
Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “Study Shows Low-dose Botox Therapy Improves Urinary Symptoms in People with…
If a cat has nine lives then I have at least twice as many. One day shy of my 50th birthday, my mind runs a vivid montage of years past. I close my eyes and I am there. I feel a heavy melancholy as the movie rolls. I see…
Several summers ago I had the misfortune of experiencing the simultaneous agony of kidney stones and gallstones. The level of pain was greater than I’d had with childbirth. It brought me to my knees and took two hospitals, one misdiagnosis, and two surgeries to get…
I received an email recently from the National Multiple Sclerosis Society in the U.S. promoting a searchable database of “credible doctors and resources.” A few days later, I happened to run across another online multiple sclerosis (MS) information service hosted by the HealthCare Journey website. They call it…
My memory is spotty at times. I utter phrases like, “What was I looking for?” more often than I care to admit. I attribute my memory lapses to my multiple sclerosis (MS) brain lesions. But is my assumption accurate? What if it is age-related or…
MS News that Caught My Eye Last Week: New DMT, Stem Cell Trial, Pediatric MS Treatment Study
FDA Will Review New Drug Application of Diroximel Fumarate for Relapsing Forms of MS The good news: Another disease-modifying therapy (DMT) has taken a step toward approval in the U.S. The discouraging news: It’s another DMT designed to treat relapsing forms of multiple sclerosis. More than a…
Hair We Go Again
I can’t quite remember when I got hooked on the writings of Jack London, but I don’t think I’ve ever quite shaken off his Nietzschean-inspired “Superman” ethos. It comes in handy for surviving in the wilds of the winter in the Yukon and forcing yourself to build a…
Over the past few months, I’ve had a few things to say about actress Selma Blair and the very public way in which she’s been handling her MS diagnosis. When Blair went public with her MS last October, she did it on Instagram, writing, “I am…
Need to Know: What Is Gait?
Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “How Do You Manage MS-Related Balance Issues?” from…
I had a busy weekend. I made it to an event I had so wanted to attend and survived it. Our golden retriever rescue had a volunteer mixer, and both Abby and I enjoyed ourselves. Once home, Abby sacked out and I began nursing the inevitable pain. The…
In the research world, references to breaking down silos abound, and we’re not talking about those found on the farm. These figurative silos are where information is contained and not shared outside of a particular area. Researchers work within their own organization, rarely sharing their work with others doing…