living with MS

The casual remark, “You seem perfectly fine to me!” bothers me (and others) because eligibility for Social Security Disability benefits requires proving we are not fine. In fact, we must prove that we are disabled, which is no small burden when we “seem perfectly fine.” ‘Looking’ disabled An acquaintance of mine…

Someone asked me to fully explain the title of my column, “Patiently Awakened.” My column title provides a brief description of what it means to me and my intentions for readers. I thought it would be best to elaborate in the column itself. Patient as a noun refers…

Relapse after First Lemtrada Course No Indication of Poor Long-Term Outcome, Study Finds Some MS patients being treated with Lemtrada report new exacerbation after they complete round one of the drug, and they wonder if this means the drug isn’t working.

Grief is something that we have all experienced. The process is a natural human response to tragedy and loss. It is often cyclical and traumatic. I have read and written various articles referencing the grief process. Discussions with my niece and my dear friend led me to write…

Patients must help develop new outcome measures of multiple sclerosis (MS), since they and healthcare providers may have differing perceptions of how crucial various measures are, a new study argues. Researchers from the Multiple Sclerosis Center of Atlanta shared this insight today at the Consortium of Multiple Sclerosis Centers (CMSC) 2017 Annual…

The latest drug media storm to erupt in Britain is “Spice,” which causes users to become living statues. Exactly a year ago, I became a living statue for six weeks, and not one reporter hassled me. That would have broken the monotony! We all have our own version…

The use of multiple sclerosis (MS) mobile apps by patients and their clinicians encourages shared decision-making and helps patients improve their outcomes, finds a study presented at the 2017 Annual Meeting of the Consortium of Multiple Sclerosis Centers (CMSC), taking place May 24-27 in New Orleans. The study, “Shared Decision Making: Connecting…

Patients with relapsing-remitting multiple sclerosis (RRMS) regain part of their balance control after a single training session of ball-throwing exercises, finds a study supported by the National Multiple Sclerosis Society. Researchers presented their study, “A Single-Session Training of Ball Throwing Exercise Improves Balance Control in Individuals with Multiple Sclerosis,” at…

I’ve just been reminded, as someone with multiple sclerosis, how fortunate I am to have good medical insurance. Unlike most other countries, where medical care is a right, in the U.S. that care is a privilege. Here the quality of care and too often the availability of that…

Genentech has rolled out a website to connect multiple sclerosis (MS) patients and caregivers with resources that can help them. The company unveiled GatherMS at the annual meeting of the Consortium for Multiple Sclerosis Centers in New Orleans. The event started May 24 and will end May 27. Genentech created GatherMS…

One of the biggest ongoing threads we have in the forum I help admin revolves around the subject of pain. We all know how pain can be disabling, or if not disabling, still influential over our moods, our ability to sleep, our energy levels,…

May 31 is World MS Day. In its honor, Teva Pharmaceuticals Europe has launched “Life Moments with MS” — a social media campaign to raise awareness about the challenges people with multiple sclerosis (MS) face every day. Teva’s campaign, which uses the hashtag #LifeMomentswithMS, also includes educational resources on what…

The past year has taken its toll on my digestive system. I’ve experienced alarming amounts of pain, bloating, diarrhea, and more fatigue than I normally experience from MS. All of these issues caused great stress both emotionally and physically, so it was no surprise when my…

Healthline recently selected Multiple Sclerosis News Today as one of the Best Multiple Sclerosis Blogs of 2017, spotlighting its columns as “thoughts from experts and patients from all kinds of backgrounds” and “a source of inspiration for everyone.” The team at Multiple Sclerosis News Today is delighted to be…

A smartphone app has been designed to collect lots of information related to your multiple sclerosis – things such as physical and cognitive test results, MRI images, and even genetic data. The hope is that via the app researchers will be able to collect a lot of patient data…

MS brain inflammation is a result of interactions between processes in the brain and the rest of the body, with interferon-gamma (IFN-gamma) being a key player, according to a detailed analysis of cytokines in the spinal fluid and serum of MS patients. Russia’s Kazan Federal University found that IFN-gamma activates other…

My walk in the park usually consists of watching every one of my steps, while conserving my energy so I can finish the trek. In the midst of my walk, I remain acutely aware of how weak my legs are, and hope they don’t give out on me. For…

Those of us with multiple sclerosis know how difficult it is to describe our journey. Words frequently are inadequate for that task. But, at Derby College in England, horticulture students and their instructors have found a way. They’ve teamed up with local MS Society branches to create a 30-foot-by-40-foot garden…

How well do you bounce back when MS gets you down? An article called “Bouncing back again, and again: a qualitative study of resilience in people with multiple sclerosis” caught my attention because bouncing back is something I don’t do as well these days. I believe resilience means to be…

Many people with MS experience symptoms related to digestion. According to the Pittsburgh Institute for MS Care and Research, “Nearly two-thirds of MS patients have at least one GI symptom that persists for 6 months or more.” Some of the most common problems are dysphagia (trouble swallowing), heartburn, nausea,…

With summer right around the corner, it’s time to start making plans. We all love spending time outdoors during the long hours of sunshine and warm temperatures, don’t we? Well, not everyone does. If you’re reading this, you’re probably living with multiple sclerosis. That…

The online BrainHQ adaptive training program developed by Posit Science is better than any computer game at helping multiple sclerosis (MS) patients improve their cognitive skills, according to a study by researchers at New York University (NYU). The study, “Cognitive function in multiple sclerosis improves with telerehabilitation: Results from…

In an article for Living Well, Julia Stachowiak talks about muscle twitches and whether or not they’re a symptom of multiple sclerosis (MS). MORE: Four types of MS-related tremors. Muscle twitches (or fasciculations) are a common symptom in other neurodegenerative diseases, particularly amyotrophic lateral…

A couple of weeks ago I wrote a column regarding end-of-life decisions. The reality is that the time will come for every human being. This journey of life and chronic illness continues to teach me salient lessons. I have been asked numerous times if I am afraid…

It’s the time of year for travel here in the U.S. Graduations, weddings and vacations are on all of our calendars. Air travel, in particular, can be a real pain for someone with a handicap such as multiple sclerosis. Security, aircraft seats and legroom are all becoming increasingly…

Two studies that recently appeared in the Multiple Sclerosis Journal shed light on how contraceptive use may affect women with MS, as well as how the disease might affect the safety and effectiveness of birth-control medications. Relapsing MS patients treated with older drugs such as interferons and Copaxone (glatiramer acetate) have a…

Fear of the future will likely rear its ugly head more often than you’d like when you have multiple sclerosis or any serious chronic disease. It can be difficult to keep your mind from wandering to a very dark place. Worries about how fast your disease is progressing,…

Pull up a chair, kiddos, and I’ll tell you a sad story. Because we’re both musicians, my husband and I love going to concerts together. We’re on a budget, so we have to be choosy about who we see and where we sit. However, there is a short…

Former Massachusetts First Lady Ann Romney, global ambassador for Boston’s Ann Romney Center for Neurologic Diseases at Brigham and Women’s Hospital, will deliver a keynote address at the Biotechnology Innovation Organization’s (BIO) International Convention in San Diego. Romney, who is scheduled to speak June 21, will talk about how her multiple sclerosis (MS)…

If I was writing fiction about two disabled people going on a road trip, I’d be pleased to create a character like Nigel. He’s stroppy, Northern (from the perspective of the U.K. there isn’t a direct U.S. analogy – think deep south– but really cold and more booze!)…