Columns

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…

Every personality test and trait indicator quiz I take tells me the same thing: I’m a polymath. Basically, it’s a fancy Greek word meaning “a person of wide-ranging knowledge or learning.” I take delight in gathering interesting facts or stories. I take pleasure in learning for learning’s sake. (Hence,…

The problem with writing a weekly column is I always need to come up with new ideas. Luckily, or rather, unluckily, MS always throws me a U.S. sports-shaped analogy — one of those trickily disguised curveballs. I wasn’t even going to attempt to write this week. Not because of…

Biogen, a pharmaceutical company that markets half a dozen MS therapies, is accused of paying doctors to prescribe its medications. A former Biogen employee claimed that the company paid fake consulting and speaking fees to doctors who prescribed Avonex (interferon beta-1a) and Tysabri (natalizumab) in 2009 and 2010. The company…

Six weeks ago, Abby, my golden retriever, had a seizure. I was sitting behind her when she began to rock; I have never moved so fast. I could only see the bloodshot whites of her eyes as she whimpered lightly and I began to wail. I intuitively hugged her,…

One thing we’ve all hoped for with our disease-modifying therapies (DMT) is a treatment that will improve our multiple sclerosis (MS) and not just keep it from worsening. The latest studies presented on Ocrevus (ocrelizumab) hold promise that this treatment may have finally arrived. According to recent reports,…

Here in the U.S., the price we pay for medications is complicated. The usual process is for a pharmaceutical company to set a high price for a medication when it first hits the market. But, like buying a car, that “sticker” price is negotiable. Health plans use pharmaceutical benefit…

Part two in a series. Read part one here. In the last column, I discussed gadolinium’s role in contrasted MRI procedures and a December 2017 warning by the U.S. Food and Drug Administration that the body can retain gadolinium in its tissues and brain for years. I also shared my personal experience with…

#AAN2018 – Stem Cell Transplant is Effective Treatment for ‘Aggressive’ MS, Study Shows I like the fact that a study shows that stem cell transplant treatment is effective for aggressive MS. I love the fact that the efficacy was dramatic, reducing the Expanded Disability Status Scale (EDSS) levels…