Columns

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…

Quality healthcare is imperative when living with a disease such as multiple sclerosis. While the operational definition of “quality” varies from person to person, I find it to be contingent on the same variable: the doctor/patient relationship. A relationship between a doctor and a patient is symbiotic. Any healthcare…

A new survey by the Kaiser Family Foundation finds that healthcare costs in the U.S. are increasing faster than general inflation. As character Private Gomer Pyle used to say on his 1960s TV show, “Surprise, surprise, surprise!” Really, those of us with a medical problem such as MS…

We all have taken advice or read about how to manage our multiple sclerosis (MS) symptoms. And we can share with our doctors, spouses, children, or friends about our experiences. But a far better emotional therapy is empathizing with a fellow MS warrior. People can’t understand living with MS…

Organizations Join Forces to Launch New Adventure Program for Young MS Patients It seems we too often ignore the needs of younger people who have MS. (I’ve written a couple of columns about this.) This program isn’t a medical approach, but it may serve some other…

It’s 3:15 p.m. U.K. time on Wednesday, May 9, 2018. My deadline for this column is actually 3 p.m. Gone are the days of blaming the dog for eating my homework; it’s only in the last few minutes that I’ve actually been able to move a bit. From 8:30…

A little over a year ago, in this column, I asked if it was safe for someone with MS to handle a gun. I wondered whether there would be safety issues due to problems with grip strength, balance, eyesight, and all the other various difficulties people with MS have…

Our life experiences shape and define who we are. While some wash over us and dissipate, others leave indelible impressions. Both emotional and physical, our scars hold our past and influence our future. We are the totality of these scars and their narrative is powerful. Each is a chapter in…

I’m agonizing over an important decision and it’s driving me crazy. I’m usually a quick decision-maker, but this one is tough. I have my analytical hat on, trying to look at my choices from a scientific standpoint. Unfortunately, my anxiety kicks in, and my hat…

As some have said, “Pain is inevitable; suffering is optional.” I believe I am an optimistic, grateful, and spiritual woman. With that said, I must acknowledge that I have an irresolute reaction when I hear that suffering is optional. Suffering is defined as the state of undergoing pain, distress,…

Mavenclad Effective in Treating Highly Active MS, New CLARITY Analysis Shows Mavenclad isn’t approved for use in the U.S. but it is approved in Canada, Europe, and other parts of the world. Here’s another positive study of the therapy. Hopefully, it won’t be much longer before Americans…