Columns

Heat and Humidity’s Effects on My MS

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…

Mind Your Mind

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…

Anyone for Golf?

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…

Getting Help Paying for Your MRIs

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…

How I Deal with the Reality of Depression

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…

Is Your MS Ready for a Disaster?

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…

My MS Medical Bills: Trust, but Verify the Charges

“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…

Dog Hair? Who Cares. How MS Freed Me

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…

A Day on the Beach, Yet So Much More!

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…

How Dare You?

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.

Dear Diary

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…

Running (Wheeling) on Empty

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 MS Medications Appear on FDA’s Shame List

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…

MS and Healing Through Healthy Eating

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…

MS and Mental Illness: The World Needs You

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…

I Have MS and I’m Very Lucky

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…

When the Bomb Goes Off

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…

Chained to My Desk

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…

A Pediatric MS Medication Gets the OK

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…