Columns

When I awaken and start each day, I feel like a hygrometer (a humidity-monitoring device). My body is so in tune to any rise in humidity that I can visualize a red line slowly climbing higher and higher. With each rise of the red humidity line, I can feel…

Discovery of ‘Fiery’ Cell Death Mechanism May Be MS ‘Game-Changer’ Researchers at the University of Alberta have discovered a process that may be responsible for destroying myelin. Better than that, they also think they have a way of limiting that process using a medication. The inhibitor, known…

I don’t know about you, but oftentimes my thoughts are as unruly and irrepressible as Mickey’s broomsticks in “The Sorcerer’s Apprentice.” Whether I’m worried about the tingling in my left foot or the fact it took me five minutes to remember the word “expeditor,” there’s always some…

A family wedding in the gardens of a grand country house some 30 minutes from Oxford sounds idyllic. And indeed it was. Not, though, for anyone in a wheelchair. A deep pebble driveway at the front was impassable. It took very strong men to drag me backward a few yards. Going…

It’s not unusual for someone with MS to have an annual MRI exam. Sometimes it’s even semiannual. And it’s not cheap. According to the website Healthcare Bluebook, an MRI of the brain, with and without contrast, can cost you anywhere from $826 to $4,780, depending on where you live…

With the recent suicides of Kate Spade and Anthony Bourdain, I feel called upon to write about something many of us are all too familiar with: depression. While these high-profile deaths made the headlines, thousands of others took their own lives during that same seven-day period. Depression is…

I’m doing all I can to remain calm and keep stressors at bay all in the name of wellness. So I’m trying to meditate at least five minutes a day — find a quiet room to sit tall, close my eyes, and focus on my…

Hurricane season began on June 1 in the Atlantic region. For people living along the coast, as I do, it’s time to plan for moving quickly. For people with mobility problems, planning is essential since, as you know, moving isn’t something that we do quickly. I wrote…

  I’ve just dived into the misty world of the allergy medication clemastine. My, there’s a lot already written about it on this site. I was prompted by an article I’d saved on Facebook last year. In an idle moment — which have been pretty scarce lately…

“Trust, but verify” was a key concept during the U.S.-Soviet nuclear negotiations of the 1980s. “Trust,” President Ronald Reagan would say, “but verify” that what’s being said is actually being done. I apply that same concept to my bank, trusting that it has all of my checking account information…

I just saw a couple of “golden tumbleweeds” swirl past my feet. My attempts at keeping a clean house are no match for Abby’s ever-falling golden locks, and I am OK with that. There was a time when those two balls of hair would have elicited profound anxiety. The anxiety…

My philosophy about living with MS is written on a plaque hanging on the wall in my home. It reads: “Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.” Olga Bobrovnikova doesn’t dance in the rain. Instead, she plays the piano.

Growing up in a spiritual family, I can remember hearing the words “we are not going to claim it.” These were words of comfort, hope, and support when a catastrophic event was impending. The dictum was to pray, believe in what you pray for, and to “not claim” whatever…

The royal blue kite struggled to stay in flight; the winds remained fickle on our day at the beach. I was mesmerized while watching a man and woman so fervently trying to manage the small diving diamond in the sky. The more I watched, the clearer the metaphor…

Chemical that Stimulates Estrogen Receptors Seen to Promote Myelin Repair Through ‘Good’ Inflammation in Mouse MS Model Caution: This is only a mouse study. However, anything that might repair the damaged myelin of people with MS catches my eye. In this case, researchers are building on earlier…

If you read my last column, you’re well aware that there has been some drama around Casa de Hughes over the last few weeks. I can now happily say that the situation has been resolved and we’re trying to get things back to a more normal, humane pace.

I never kept a diary. I did sometimes muse about it but reckoned I’d never become famous enough for one to be useful. Well, at least in that I was right. Until the rise of the smartphone, anniversaries and birthdays were flagged by my oldest son, who has the gift…

MS medications are expensive. Many people with MS are able to afford their high prices only because their insurance covers most of the cost, and what remains as their copay is often covered by many of the pharmaceutical companies that produce those meds. The companies offer patient assistance…

Yesterday, the clerk at the grocery store asked how I was feeling. Having known her for 15 years, I glanced at her over the rim of my sunglasses and we shared a knowing laugh before moving onto inane topics. She knew exactly how I was feeling without my saying a…

In the United States, the government can do very little to control the costs of our expensive MS medications. In the United Kingdom, it’s a different story. The U.K. has an organization called the National Institute for Health and Care Excellence, better known as NICE. NICE provides healthcare…

Arguments over nothing and everything are, in my experience, induced by extreme stress. When my wife and I were at full bore working together, this often happened. Not at work — there wasn’t time — and we were professional. Domestically, what little downtime we had would often be spent…

Two multiple sclerosis medications that are both popular and expensive are on a new list that U.S. regulators hope will increase price competition. The medications are Ampyra (dalfampridine), made by Acorda, and Tecfidera (dimethyl fumarate), by Biogen. They’re included on a list of more than 50…

Awareness is, at times, barely imperceptible, a quiet conviction that lies within. As with most truths, they are self-evident long before we decide to own them. And when we do, it is as if we have opened our eyes for the first time. My eyes are open. Living with progressive…

First in a series. For a minute or two, I felt like I was in a time machine. It was late March, and I was test driving (perhaps test walking) the WalkAide System, a functional electronic stimulation (FES) device designed, according…

Spring has sprung! As I look around, Mother Earth is in bloom. Trees are sprouting new leaves, plants are growing, and the grass is green once again. I love spring and all that it represents — hopes for new birth and rebirth. For those who are unaware, May is Mental…

National Nurses Week was earlier this month. I’m a little late saying it, but, “Thank you, nurses.” And doctors. I’m really a lucky guy. Lucky to have had fabulous nurses. Lucky to have had a couple of top-notch neurologists. My luck began in August 1980 with Dr. Stanley…

Complications from Gilenya Treatment Managed Successfully, Case Report Says This wasn’t a minor complication. It was a version of PML, a brain disease that can be fatal. PML is also a known side effect of Tysabri, so the report of a successful treatment should be important to…

It’s easy to be lulled into a false sense of security, to think you’re the supreme authority in your life. And when that ersatz truth is ripped away, as it was for my husband and me the last week, it can be hard to regain your footing. I’ll spare…

The tinkling laughter of tiny children filters through the windows of my bedroom. It’s a sunny Sunday afternoon. In years past, I would be sitting in the garden watching my grandnieces play. Undoubtedly with a large jug of Pimm’s that I would have concocted for the assembled adults. We’re…

Until about a week ago, no medication was approved in the U.S. to treat patients with pediatric-onset MS (POMS). Now there is one. The Food and Drug Administration (FDA) has given its OK to use Gilenya (fingolimod) to treat relapsing MS in children and adolescents starting at…