Living with MS

Members of Parliament and the Multiple Sclerosis Society of Canada are jointly celebrating May as Multiple Sclerosis (MS) Awareness Month. Both parties met in Ottawa April 30-May 2 to kick-off the MS awareness campaign #LifeWithMs. According to an international survey, it is estimated that one in every 340 Canadians…

Constraint-induced movement therapy (CIMT), a rehabilitation technique originally developed for stroke patients, may also be effective in improving limb use in the daily activities of multiple sclerosis (MS) patients, results from a Phase 2 trial show. Findings were reported in the study, “Phase II Randomized Controlled Trial of…

I saw my neurologist a few weeks ago for what was effectively an emergency meeting. I’d had the customary two rounds of Lemtrada (alemtuzumab) and still had a relapse. We discussed weighty subjects and there seemed, surprisingly, to still be some hope. It depends on the outcome of an MRI;…

The American Academy of Neurology (AAN) has just released some new guidelines about when to begin, change, and end disease-modifying therapies (DMTs) that are used to treat MS patients. The guidelines, published on April 23, encourage aggressive treatment when symptoms of MS first appear. They’re also patient-centric. And…

I’m a great starter. How about you? I start projects but often lack the time or motivation to finish them. Hence, I have bins full of yarn waiting to be turned into scarves and lots of seeds that were meant to be planted in the past growing seasons. It’s…

April is my month. The weather gets warmer, the world gets greener, and everything just generally lightens up. I was born in April. My wife and I were married in April. My favorite holiday is April Fools’ Day. I love…

At times I find myself speaking of and referencing my life before my MS diagnosis. My thoughts led to the creation of the following epistle. I believe that words are curative and the spirit absorbs what we speak. As you read my letter to multiple sclerosis, remember that you…

5 MS Patients Across US Talk About How Ocrevus Has Changed Their Lives There’s high interest in Ocrevus (ocrelizumab), one of two disease-modifying therapies that have shown promise for reversing some multiple sclerosis (MS) symptoms. (The other is Lemtrada.) So, I’m including this article. Keep in mind,…

It’s spring — at least, it’s supposed to be — so getting stuck at the airport due to snow was the last thing I expected during a recent trip to Grand Rapids, Michigan. But that’s exactly what happened to me on Sunday. I sat with thousands of fellow passengers,…

Really big things are going on in the world. WW3 is again flagged as a possibility. My world is considerably smaller. It’s mostly my bedroom. I can get out of it, but it takes a considerable effort. In the last seven days, I only exited it once. Last night, I…

Americans who want to treat their MS with a stem cell transplant have a tough road to follow. They’re forced to travel to Russia, Mexico, or somewhere else out of the country and to spend a lot of money to avoid the U.S. Food and Drug Administration’s stem cell…

There is no guidebook to living with a chronic, progressive, and incurable disease. Even if such a book existed, it would only be somewhat applicable, as things change on a daily basis. We are all as unique as this disease, yet have one commonality: pain. Before my multiple sclerosis…

With apologies to Edgar Allan Poe, quoth the Lemmie, “Nevermore.” As I write this, the final brown bag of Lemtrada (alemtuzumab) has just begun to drip into a vein in my left arm. If all goes “as advertised,” this will be the final disease-modifying therapy I’ll ever receive.

It’s been a little over a year since U.S. regulators approved Genentech’s Ocrevus (ocrelizumab) as the first treatment for both relapsing and progressive forms of multiple sclerosis (MS) — a disabling neurological disease now believed to affect nearly one million Americans. While the jury’s still out regarding the therapy’s…

My morning ritual of showering for a fresh start to my day has progressed to a once-a-week occurrence. Like everything else that my multiple sclerosis (MS) affects, less shower time is not by choice. I take sponge baths daily of course, but actual showers are reserved for when I…

The stars sometimes align, even for us atheists. My son was making a fleeting weekend visit from his last year at his university. It’s all we were going to see of him over the Easter period. He’s taking it very seriously and aiming for top grades in math. The week…

Do you have a question or comment about MS? Can you answer someone else’s question? We’ve just created an MS Forums section on Multiple Sclerosis News Today designed to spark conversations about our MS and to try to provide some answers from reliable sources when you have a…

The MS Focus: Multiple Sclerosis Foundation will be accepting applications through June for its Cooling Program, which provides cooling garments to multiple sclerosis patients whose condition has left them heat-sensitive. Although 60 to 80 percent of patients are heat-sensitive, there were no MS-specific cooling garments on the U.S. market until…

Editor’s note: Tamara Sellman continues her series on the “MS alphabet” with this column referencing terms starting with the letters “U” through “Z.” This is the last post in this series.  Symptoms of MS Uhthoff’s phenomenon People with MS are often heat-sensitive and experience overheating due to…

Today is Walk MS, and for the first time since my diagnosis, I am not there. While I am not one to feel sorry for myself, this stings. I miss being among the sea of impassioned orange warriors. I miss the tears that fall as cheers accompany me through…

After a delay in treatment in late December thanks to a nasty head cold, and the after-effects of contracting the flu in February necessitating another delay, I finally received my second six-month dose of Ocrevus (ocrelizumab) in mid-March. Much like the first time, the infusion was uneventful. I had no…

It is noon on Wednesday, and I am sitting in a chair in our living room. My wife holds two books against my hips, one on either side, while Stefani, my occupational therapist, measures the width — measuring me for a wheelchair. Like a lot…

While growing up, I loved seeing fireflies (or lightning bugs, as I called them) at night. My friends and I would chase them, trying to grasp one. There was something about the light and their ability to shine in the blanket of darkness that engulfed us. We felt…

As you read this, I likely will be in the middle of, or finished with, my second round of Lemtrada (alemtuzumab). Hopefully, this will be the final round of this disease-modifying therapy (DMT), and the final MS treatment of any kind, for me. Though some have required more,…

The Dartmouth-Hitchcock health system is starting a three-year nationwide study of the quality of care that multiple sclerosis patients receive. It will focus on geographic differences in care and quality improvement. The project’s name is the Multiple Sclerosis Continuous Quality Improvement Collaborative study. Its goal is to improve care by sharing…

On Good Friday, my family and I took a three-day road trip to lay my husband to rest. Our goal was to honor his last wishes and set his ashes free in the wilderness that he so loved. My husband enjoyed going archery hunting almost every fall, until a…

Online Meditation Course Seen to Help MS Patients Manage Symptoms in Clinical Trial Can someone use a website to learn how to meditate, and then do it well enough to have their MS symptoms improve? Well, maybe. This small study reports that patients who completed an online…

A recent pop-up cafe in Dublin allowed customers to experience what it’s like to live with multiple sclerosis (MS) to highlight the urgent need for improved access to care and treatment for MS patients in Ireland. MSunderstood Café gave customers a small taste of the challenges and symptoms MS…

When I tell people I have multiple sclerosis, I usually get one of three responses: • “Oh, no! I feel so bad for you!” (Pity) • “Is that the one with the telethon?” (Confusion) • “I know all about that disease! My sister-in-law’s cousin’s college roommate has…

Let me introduce you to my wife, Jane, by cheekily lifting the title “Be My Wife” from possibly the only accessible track off Bowie’s seminal ’70s album, “Low.” Through these weekly columns I’ve mentioned her often enough, but I’ve never formally introduced her. Mea culpa. I didn’t have…