living with MS

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…

A few weeks ago I warned of the dangers that are possible when people turn to social media for information about their MS. But there’s another danger that technology and the internet have brought us: access to our own medical records. Sandra G. Boodman has taken…

Editor’s note: Tamara Sellman continues her series on the “MS alphabet” with this column referencing terms starting with the letter “T.” Symptoms of MS Tinnitus You may already know this as “ringing in the ears.” But ringing as a descriptor is a bit subjective, as tinnitus…

Have you ever been touched by the actions of one of your doctors? I hope we all have experienced special moments with our care providers because these times break down the authoritarian nature of medicine and allow us to interact as people rather than patients. A heartwarming moment took…

In the first year after being diagnosed with multiple sclerosis (MS) in 1997, Ann Borsellino basically withdrew from life, rarely even leaving her bedroom. Knowing little about the disease, she assumed its relapses would soon rob her of any control over her body. They didn’t, and now Borsellino is involved with…

While Reese’s Peanut Butter Cups are the true “two great things that go great together,” calcium and magnesium take first place for those with MS. Many proponents of special diets for MS encourage the consumption of foods high in this mineral dynamic duo (along with other vitamins needed for…

My column last week was a recap of my journey to a primary progressive multiple sclerosis (PPMS) diagnosis. This week’s column continues that theme by showing a glimpse of what it is like to live with PPMS on a daily basis. To say that having a disability like…

Multiple sclerosis patients are among those with debilitating diseases who are most satisfied with their healthcare, two surveys indicate. Others who are satisfied include people with amyotrophic lateral sclerosis and Parkinson’s, according to the questionnaire-based PatientsLikeMe research. In contrast, people with fibromyalgia, post-traumatic stress disorder (PTSD) and major depressive disorder…

I spent the majority of my life as a people pleaser. From the time I was young, I equivocated “yes” with likability; please and be pleased. As the years passed, compromising my own needs became second to meeting those of others. While I genuinely enjoy…

It was late May 2014, and my wife and I were on our first trip to the Cleveland Clinic. We’d been to Cleveland for a wedding a few years earlier but had been too busy to explore. We booked a room at the…

We’re all familiar with the yearly observance of MS Awareness Week and MS Awareness Month to raise awareness about multiple sclerosis. Considering that so many rare diseases, such as Graves’ disease or Ehlers-Danlos syndromes, go largely unnoticed, the MS community is blessed with its fair…

We are approaching the conclusion of National Multiple Sclerosis Awareness Month, but those of us with MS know that the responsibility to educate is unending. I was pondering what my topic would be this week. As awareness month exits, I want to proffer an encouraging message. This…

For years, my wife and I have disagreed about smells. She smells something and I don’t. I tell her that her nose is too sensitive. She tells me to get out the air freshener. Over the 37 years since my MS diagnosis, this conversation has happened thousands of times.

I have lived with the diagnosis of primary progressive multiple sclerosis (PPMS) for almost eight years. For many years prior to that diagnosis, I was confused by what could be causing my abnormal gait, extreme fatigue, blurred vision, and trouble concentrating. During that time, I completed many diagnostic tests, dealt…

I got a phone call from my MS One to One nurse, Lynn, today. One to One is the patient support service provided by Sanofi Genzyme for patients on the biotech company’s MS disease-modifying therapies (DMTs) Lemtrada (alemtuzumab) and Aubagio (teriflunomide). Lynn called to ensure that all…

The Consortium of Multiple Sclerosis Centers (CMSC) is partnering with a number of organizations during Multiple Sclerosis Awareness Month in March to provide education, research and services to the MS community. CMSC is a non-profit organization that provides educational programs and resources to MS professionals, healthcare providers, researchers and the…

Today, I ate a dog treat. I was eating cookies from a nearby bowl when I broke a dog treat in half for Abby. Instead of putting the other half in my pocket, I put it in my mouth and chewed. Wondering how the brand could screw up so…

Fatigue. That No. 1 symptom that a large majority of people with multiple sclerosis are affected by. MS fatigue. It can be crushing, numbing, and stop the hardiest person in their tracks. I know MS fatigue all too well because it affects me all the time. Combating MS…