Columns

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…

Does your MS limit your ability to find a date? (Courtesy of Lemonayde) Dating isn’t a concern of mine, since I turned 70 earlier this month and have been happily married for 42 years. But younger, single folks with MS regularly post concerns about starting relationships on various…

Today, I tried to run. In my mind, I saw myself running with fluidity. I felt a weightless ability to lift, then cycle each knee and foot in perfect rotation. I felt my foot lift up and off the ground. My drop foot prevailed, and I fell. Other than injured pride…

Medical cannabis has created a dilemma for medical providers who care for people who might benefit from its use. I’ve been thinking more about this lately because my home state of Ohio will have legal medical marijuana dispensaries starting on Sept. 8. The law passed in 2016, and it…

I’ve been using a mobility scooter for about 10 years. I use it anytime I need to walk more than about half a city block. I throw it in the back of my SUV, I’ve taken it on planes and cruise ships (I’ve ridden it in 15 or 16…

Cannabidiol Increases Inflammatory Suppressor Cells, New MS Mouse Study Shows There’s quite a bit of anecdotal evidence that the use of marijuana can help reduce the symptoms of multiple sclerosis (MS). Here’s a report about a study that suggests a reason that could be happening. Non-psychoactive cannabidiol (CBD),…

I knew I had MS nine years ago when I went back to see my neurologist. I’d had the lumbar puncture to prove it definitively, and I displayed all the requisite symptoms. The only question I had was, “Will this lead to me being in a wheelchair?” The…

Aug. 1 was a busy day around our house. Backpacks needed to be loaded up, breakfasts consumed, pictures taken, and shoes tied tightly before the bus arrived. Yes, it was the first day of school. (I could talk about how ridiculous it is for kids to be going back to…

I get my medications the old-fashioned way. When I need to fill a prescription, I either go to the drug store or use a mail-order pharmacy — and usually, I have a copay. Sometimes the copay is just a few dollars, but sometimes it can be a few hundred.

I can describe myself with a myriad of words: kind, funny, smart, quirky, and stubborn, to name a few. So many words are descriptive of my persona; I almost felt safety among them. Almost. I have always preferred paved road to dirt; my place was to shine the already…