Columns

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…

Ohio, my home state, is wrestling with the nuances of medical marijuana laws that become effective on Sept. 8, 2018. My husband’s work email had an important notice from the Bureau of Worker’s Compensation (BWC) about this pending change, and as I read it, I thought that nothing really…

When I was younger, I never thought about trying holistic therapies to aid healing. Looking back I wish the medical community had embraced these therapies as potential treatments for MS symptoms. My first few years of living with MS were an incredible struggle; there were…

The neurologist who treats my MS is a woman. So is my primary care physician. I wouldn’t have it any other way, and an article in The New York Times makes me feel my decision is the right one. Patient studies tell the tale The Times article points…

As a 61-year-old woman diagnosed in 2010 with primary progressive multiple sclerosis (PPMS), I was overjoyed when the U.S. Food and Drug Administration (FDA) approved the therapy Ocrevus (ocrelizumab) in March 2017. Because Ocrevus is the first treatment approved to possibly slow the progression of PPMS, the FDA’s green…

Lemtrada Can Lower Number of B-cells Infiltrating Nervous System and Forming Clumps, Animal Study Shows I usually stay away from recommending articles about mice studies, but this article does a nice job of explaining how Lemtrada works and the role of B-cells in multiple sclerosis (MS). As…

Everything takes so much damn time! I’m strangely working — or at least doing things I purport as work, such as this column. That’s no different than before MS; I still have the inclination to prevaricate or find something inconsequential to ruminate over, like the state of the Turkish…

Over the past week, I’ve come across two short films that are designed to show what it’s like living with MS. But they have two very different approaches. Interested in MS research? Sign up…

Last week, my husband and I attended an outdoor concert in a small venue that we used to regularly attend just a few years ago, before my MS affected my mobility. Our last concert there was two years ago, and although I was skeptical about going, the weather was perfect, and…

The journey of chronic illness has taught me that our families are greatly affected by our illnesses. Spouses, parents, siblings, and many others can attest to their personal stories of loving someone who is chronically ill. My inspiration for this week’s column was a discussion I recently had with…

I’ve been away for about a week, the first break of that length that I’ve had from writing about MS in about two years. Much of that time was spent on a trip from Long Island, New York, to Newport, Rhode Island, aboard the Mariner. Marine chart of…

Multiple sclerosis (MS) consists of more than lesions; it also comprises silent inflammation. Lesions seem to get all the attention, as they are photographed and flashy, and the main topic in MS circles. But silent inflammation is what is running the havoc behind the scenes. The MS Society…

Hair Loss Seen in RRMS Patients Using Aubagio Often Temporary and Mild, Study Says I read a lot of questions on multiple sclerosis (MS) social media groups from people who are worried about hair loss caused by their disease-modifying therapy (DMT). Aubagio (teriflunomide) is one DMT with…

I’ve been thinking a lot about privilege in recent months — what it enables as well as what it prevents. Those who benefit from it may not be aware of their position, and when their privilege is pointed out, they have a hard truth to face. Many refuse to…

Well, this is going to be a niche market: A picture of a toilet should grab the attention of any plumber who’s now got MS and reads Multiple Sclerosis News Today. Victories need to be celebrated no matter how small the Venn diagram is! The toilet looks OK.

When the following headline in the Australian newspaper the Herald Sun caught my eye recently, I was cautiously intrigued: “Doctors believe they have discovered the cause of multiple sclerosis” My cynical heart didn’t go pitter-patter as…

I knew it was going to be one of those days as soon as I opened my eyes. I woke in some sort of half-start, my eyelids popping abruptly open as I looked up at the ceiling. Something seemed…

Have you ever asked yourself, “What am I supposed to do with my life?” or, “How did I get here?” I have asked these questions several times throughout my existence. Those questions regurgitated at the occurrence of every life-altering event. I did not receive a definitive answer that appeased…

  Living with multiple sclerosis (MS) could be compared to having an annoying house guest who never leaves. You can tolerate them at first, but soon your nerves and resilience wear thin. You try to accept and adapt to the house guest, but you never give up on trying to…

Most weeks with MS are downbeat. That’s hardly a way to capture a reader’s attention — all of us struggle. What we need is light to blow away the shade. Last night as I climbed the stairs to bed, my legs gave out with three stairs to go. Luckily,…

If you’re going to buy a car, do you limit your shopping to just one car dealer? If you need gas, do you drive past three inexpensive service stations because someone told you to fill up at a fourth, where the price is much higher? I don’t think so.

As I pulled into the overcrowded Trader Joe’s parking lot, I was grateful to see an open handicapped space. Once parked, I turned off the car engine and paused; the heat was oppressive. Ten days post-chemo/Solu-Medrol (methylprednisolone) and my fatigue was as thick as the stagnant humidity. I…

There are many things that confuse me, particularly in the medical area. Perhaps that’s why I am more comfortable thinking about MS patients’ quality of life rather than being into the hard science of medicine and understanding how medicines work. I’m thinking in particular of botulinum toxin, more…

Last week, I wrote about climbing through grief. This week, I will focus on what I learned in the throes of the cycle of grief. Several people share the opinion that I do too much. My cousin often says that he wants me to say no to…

Leaving a restaurant the other evening, I was stepping off an unusually high curb. Right cane down, left cane down, swing the right leg, swing the left leg, and … uh-oh. Down I go. I’d been asking for it. I’d needed to change the electrodes on the Bioness…

Oral DMTs Still Common 1st Therapy for New MS Patients but Ocrevus Having Impact, Market Report Says Deciding on what therapy to use is a tough decision for people with MS and their doctors. That’s especially true for someone who is newly diagnosed. Do you go with…

Maybe it’s because I’ve been listening to too much Jackson Browne lately, but I’m distressed by the state of the world these days. And it’s not the big-ticket stuff like politics or social dysfunction that’s got me worried, either (though both take turns keeping me up nights). It’s…