Columns

At the start of all of this, when I was laid low in the hospital by what turned out to be sclerosis, I was visited by my mate Nigel. He is the king of sclerosis (I’ve written about our “ill” starred bromance in this column) and he offered this…

Many of us have received help to pay for our MS medications. Now there’s a chance that assistance could be threatened. A recent article in the The Wall Street Journal reports that U.S. government prosecutors are looking into whether some pharmaceutical companies’ patient assistance programs are on the wrong…

I do not sleep well. Ever. I have tried a myriad of meditations and medications, yet sleep evades me. It is 2:30 a.m. and infomercials are taking over the airwaves. My knowledge of everything Ginsu knives is overrated. (Pro tip: If you wait until the end they always offer…

We all know how difficult it can be to find an accessible parking spot — one that allows us to park and get from our car to where we’re going with a minimum number of steps. There aren’t many of these spots in most parking lots, and sometimes the…

Dental hygiene is not a high priority for some people. Brushing, flossing, dental checkups, and cleanings are often overlooked or avoided. For those with a disability, keeping up with a dental care routine can be incredibly challenging. While the energy expended to ensure proper dental care can increase fatigue,…

Often-overlooked MRI Signal May Aid in Early Diagnosis of MS, Other Brain Conditions, Study Suggests A part of an MRI scan that radiologists call a “background signal” is what’s being looked at. It’s usually ignored because the signal doesn’t seem to change even when a patient is…

Last Wednesday morning didn’t go according to plan. I’m lackluster every Wednesday morn because Tuesday nights are my regular work gig at London’s Comedy Store. I laugh too much, drink too much, and don’t get home till about 11:30 p.m. Still, I had a good sleep. My new…

Ocrevus (ocrelizumab) is a serious disease-modifying therapy. It has the potential to deliver a major blow to a patient’s MS, but it also carries the possibility of severe side effects. The protocol for Ocrevus requires different doses on different infusion dates, following a specific treatment schedule. It’s also…

I saw my neurologist earlier this week. After my work-up, we sat and discussed how well I manage my multiple sclerosis. How well? No comment. Suffice it to say this disease is a worthy adversary. I have been feeling a little funky since that appointment. I have been looking to…

Every life has purpose. Every voice has power. I decided long ago to speak my truth. My advocacy journey has inspired me to share my experiences courageously, and to embrace all that I am. Advocacy is defined as public support for, or recommendation of, a particular cause or…

I never thought I’d want a wearable internet device until I got an Apple Watch for my birthday. One of its neat apps tracks the laps that I swim, the steps that I (try to) take, and my pulse rate. The watch can even link up with some high-tech…

Phase 3 Trial in the UK Soon to Test Statin, Simvastatin, in Slowing SPMS Progression I’ve taken a statin medication for years to keep my cholesterol in check. Now, a study is getting underway to see if one statin pill can also be used to treat MS. It’s particularly…

A couple weeks ago, I went to my neurologist’s office early for my annual MRI. It’s never a pleasant experience. Even after 14 years, it’s still as unsettling as it was the first time. It’s not the tightness of the space that gets me or the sensations and sounds.

Second in a series. Read part one. Last week, I wrote about solving my back problems by purchasing a mattress topper for my bed. It was a good thing, too, as I was going into the hospital for a lumbar puncture. It was as if I planned it; well, my…

Is quadrupling the price of a medication “moral”? One pharmaceutical CEO not only thinks so, but he also says it’s a “moral requirement.” The medication is liquid nitrofurantoin, an antibiotic mixture that’s primarily used to treat bladder and urinary tract infections. Since UTIs can be a problem for people…

Having just written about uninvited commentary, I found this gem too awesome not to share. I went to the grocery store in my requisite San Francisco Giants cap and Ray-Ban sunglasses. Upon leaving, I chatted with the checker about the usual inane topics. Knowing my health status, she asked…

Editor’s note: Shortly after this column was published, Mylan pharmaceuticals announced it will begin distributing Dalfampridine Extended-Release Tablets, 10 mg, the authorized generic version of Acorda’s Ampyra. There’s been no word, yet, on what it will cost or how soon the generic will become available in pharmacies. A few…

Remyelination therapies are on the horizon as an innovative multiple sclerosis (MS) treatment, according to my neurologist. These therapies have been on my radar the last few years, but to hear my neurologist say they could soon be a reality makes me hopeful of the possibilities. To offer a…

First in a series. So this is what an earthquake feels like? Well, it wasn’t that dramatic, but it was the middle of the night, and I’d been abruptly awakened to find myself lying at a 45-degree angle. This took a bit of processing. The frame of our bed had broken!…

Relationships are a quagmire in and of themselves. Throw in a chronic, progressive disease, and you have yourself quite the ride. This ride has excitability, steady inclines, crescendos, fun and free times, steep ravines, and shake-ups. Inevitably, balance is restored. That pretty much sums up my marriage. Let me…

Third in a series. Read parts one and two. In March 2018, I began a personal research project — quest if you will — to assess how functional electrical stimulation (FES) devices might help me deal with the foot drop in my…

Death. It will come to each of us; this is an indisputable truth. The recent deaths of Aretha Franklin and Sen. John McCain are the inspiration for this week’s column. As I watched and listened to the memorials and eulogies, the rich legacy they leave behind is…

The start of flu season here in the United States is just a few weeks away. It’s time for my wife and me to get our flu shots, just as we have for as long as I can remember. My neurologist and our primary care physician both recommend the…

How B-cells Work to Promote T-cell Attacks on Myelin That Lead to MS Detailed in Study I keep a close eye on reports about B-cells and T-cells because they’re the targets of Lemtrada, which is my current disease-modifying therapy. (The DMT Ocrevus targets B-cells alone). So, this…

This past weekend was a busy one. My husband and I flew to Las Vegas on Saturday morning, saw a concert there Saturday night, and then flew home Sunday morning. Yep. We spent 24 hours in ol’ Sin City, U.S.A. and eight hours on a plane to get there…

Now, I’m all for complimentary comments on my columns, and in the combative world the internet has engendered, the stroppy ones, too. But it’s when you lot start writing to each other that I know I’ve hit something. Which is a good thing, however irrelevant I then feel. A…

Last week, I flew home from San Francisco. As I walked up the jetway, I moved to the right and held the handrail to allow others to pass. Once in the airport, I proceeded to baggage while showing another passenger where to go. As we parted ways, he looked at…

Medical tourism is a term describing when people seek medical care by traveling from home countries to somewhere else. It’s an area of commerce that has existed for centuries, as people in ancient Greece once traveled to far away islands to visit healing gods. Medical tourism continues today, and…

Ocrevus, a disease-modifying MS treatment that’s only been on the market a little less than 18 months, appears poised to be a cash cow for its maker, Genentech. The research firm Spherix Global Insights, which analyzes trends in the pharmaceutical industry, predicts that Ocrevus is “poised to…

Well, it’s not a cure, but working hard sure takes my mind off MS. In fact, I’m so rushed off my feet (irony intended!) I’m not sure I have time to write this. But if I stop and ruminate, then my bedroom turns from a frenetic office into a…