Columns

When I was diagnosed in 2010 with primary progressive multiple sclerosis (PPMS), I didn’t know what to expect. It quickly became apparent that my doctors didn’t know, either. I’m sure they could have given me some scenarios of what my future might be…

Sorry, this story is definitely parochial and about being disabled, rather than narrowly focused on having MS. It also turns out to be somewhat celebratory — albeit starting from a criticism. Before I get to that, a bit of history. The black cab is an international symbol for London like…

People with multiple sclerosis (MS) rarely get the opportunity to talk to the people who design their medications. But a new collaboration is providing that opportunity to a few of us. The Accelerated Cure Project for Multiple Sclerosis (ACP) and pharmaceutical manufacturer EMD Serono have begun working together…

In a previous column, I wrote about circumvention tourism, in which patients travel to another country to access a medical treatment that is unavailable in their home country. I wrote it in response to someone in the MS community who promoted travel to an offshore island…

I’m not taking all the medication I’ve been prescribed. Chances are, you’re not either. Medication nonadherence, or not taking medicine as prescribed, is a thing — a big thing. According to a column in The New York Times,…

Is getting from home to a healthcare appointment a pain in the butt for you? Do you have to search for someone to take you? Do you haul yourself into your car and hope that you can find a nearby parking spot? Is public transportation impossible to find where…

Everything can be more challenging when you have a disability, and being part of the workforce can add even more challenges. The month of October is National Disability Employment Awareness Month (NDEAM), and according to the U.S. Department of Labor’s website, this year’s theme is “America’s Workforce: Empowering All.”…

Lower Fatigue Reported by MS Patients After aHSCT in Canadian Study Fatigue affects 90 percent of people with MS. It certainly impacts my life. This study, though very small, reports a 36 percent reduction in the median modified Fatigue Impact Scale (mFIS) score three years after autologous…

After reading more than a few articles about how social media demolishes our attention span, prevents us from forming healthy real-world relationships, and causes higher-than-normal rates of depression, stress, and insomnia, I decided to cut way back on screen time. And you know what? I don’t miss Facebook and…

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…