quality of life

In the video game “Tetris,” players fit falling puzzle pieces together in order to create the most complete picture. As the game continues, the pieces fall faster. Creating order and cohesion out of chaos is necessary, as it is a common human desire. I never liked “Tetris,” but…

“The very beating of your heart has meaning and purpose.” This is a quote from Andy Andrews in “The Butterfly Effect.” I have referenced this quote on several occasions. It speaks volumes because it affirms that we are here on purpose, not by chance. I did an…

Merck’s Mavenclad tablets significantly improve quality of life among relapsing multiple sclerosis patients while reducing the number of relapses, according to new analyses of previously unpublished data from clinical trials assessing the drug. This new data, published in the Multiple Sclerosis Journal, come just as the European Commission ponders whether to approve the once- rejected therapy to treat relapsing forms of MS. Its decision is expected later this month, seven years after a perceived increased of cancer risk led the European Medicines Agency (EMA) to block Mavenclad. In 2011, the U.S. Food and Drug Administration (FDA) rejected the medication, forcing its eventual withdrawal from the Australian and Russian markets, where it had already been licensed. For the study, researchers at Queen Mary University of London used data obtained from the EMA through a Freedom of Information request. They analyzed data from the Phase 3 CLARITY trial, which compared Mavenclad to placebo. The trial's 1,326 participants completed a quality-of-life questionnaire that focused on disease aspects such as mobility, self-care, usual activities, pain or discomfort, and anxiety. After two years, those on Mavenclad had significantly improved their quality of life compared to the control group, particularly in terms of self-care. Mavenclad also helped mobility, which might be related to its ability to prevent relapses and delay progression, researchers said. While researchers assessed quality of life using two different questionnaires, patients had only completed one in sufficient numbers to allow for a solid analysis. The other quality-of-life tool provided researchers with numerically positive results, but the low number of responses made the result difficult to interpret. This wasn't the first time QMUL researchers have contributed in this way to knowledge of Mavenclad in MS. In 2015, they used a Freedom of Information request to obtain data showing that Mavenclad was not related to increased cancer risk. “Cladribine seemed to have such excellent potential as a treatment for MS that we thought it was tragic the development program was shelved, and significant parts of the clinical trial data remained unpublished,” study leader Klaus Schmierer, a neurologist at both QMUL and Barts Health NHS Trust, said in a press release. “In addition to the drug being highly effective, well tolerated and safe as far as short-term studies can show, we now know it also improves patients’ quality of life. The new results seemed so clear, we felt it was extremely important to publish and share these data." Mavenclad has now been studied in some 2,700 patients with relapsing MS in the Phase 3 trials CLARITY, CLARITY EXTENSION, and ORACLE-MS, as well as the Phase 2 ONWARD trial, and the ongoing long-term study PREMIERE. The treatment differs from most other oral MS therapies in that a short treatment course — a maximum 20 days — triggered effects that were upheld for two years. Studies of Mavenclad’s mechanisms suggest the drug gets such results by resetting the immune system. In June 2017, the EMA's Committee for Medicinal Products for Human Use urged the European Commission to approve Mavenclad. Merck also plans to seek U.S. approval for its therapy and is now in talks with the FDA about Mavenclad's future.

In “On Writing: A Memoir of the Craft,” as excellent a book about wordcraft as has ever been set to paper, Stephen King says, “Books are a uniquely portable magic.” I’m inclined to agree. After all, no matter where you are, you have company if there’s a book at…

What is it about the passage of time that can make you look at the same situation with diametrically differing points of view? I have come to find that my acceptance of, and zest for, life has been congruent with the appearance and progression of…

Long-term Tysabri (natalizumab) treatment of relapsing multiple sclerosis (RMS) improves physical and mental health and leads to greater satisfaction with therapy, new research shows. The study, ”Long-term natalizumab treatment is associated with sustained improvements in quality of life in patients with multiple sclerosis,” appeared in the journal…

Believe it or not, summer is nearing its end, and a new school year is upon us. I don’t know about you all, but I loved back-to-school time. It meant new things to learn, friends to make and activities to try. It involved a new wardrobe, too, but…

Living with an incurable, progressive disease can be physically and emotionally exhausting. I’ve always been a girl who thrives on proof and assurances, and there seem to be little of either where MS is concerned. It’s taken me quite a while to settle into the awkward instability that is ambiguity,…

  I was diagnosed at a time when no approved medications for MS existed and there was no internet to search for information about the disease. I was in my late 20s, dating the man I’d eventually marry and wondering how this new normal would affect my life. I’ve…

My multiple sclerosis (MS) brings fatigue, pain, and instability into my life, but surprisingly, it also makes me more aware of my life and surroundings. For me, that means being more aware in the present moment and focusing on the good in my life right now. Living in…

A silver lining is the hopeful side of a situation that might seem gloomy on the surface. A metaphor for optimism, this accurately describes who I am. This is not to say that I don’t experience the inevitable darkness that accompanies those trying days living with progressive multiple sclerosis, I…

Fatigue, limited mobility, and poor self-esteem or resiliency were found to be associated with periods of serious depression among multiple sclerosis patients, according to a recent study. Previous research has suggested that MS patients are at risk of major depression, with potentially profound impact on their quality of life. But only a few studies have addressed the incidence of depression among MS patients or the risk factors that may underlie its occurrence. Researchers in Canada enrolled 188 MS patients being treated an Alberta clinic, who were interviewed to assess potential risk factors for depression: namely, socioeconomic status, disease-related factors, childhood risk factors, psychosocial factors, and health behaviors. Participants were also asked to complete the Patient Health Questionnaire every two weeks for six months to identify depressive symptoms in real-time. Over a six-month follow-up, 36 cases of depression were reported among the group of MS patients analyzed. The incidence of depression was 0.019 for women, but higher — 0.044 — for men. Importantly, several factors seemed to be associated with depression in these patients — fatigue, limited mobility, and low resiliency, self-esteem, and self-efficacy, as well as poor coping skills. Results also showed that gender and income were associated with depression. Overall, the researchers concluded that "depression in MS exhibits a risk factor profile similar to that of depression in the general population, with the additional impact of MS illness-related factors. Potentially modifiable risk factors, such as coping with stress and resiliency, present opportunities for focus of further research in depression in MS treatment and prevention efforts." Concerning treatment, the team also emphasized that "while there is evidence in the clinical context that supports the efficacy for pharmacologic and non-pharmacologic treatments for depression in the general population, there is currently insufficient evidence to support/or refute the efficacy of depression treatment for individuals with MS ... Clearly this is an area that requires additional research."

The second module in the National Multiple Sclerosis Society’s positive psychology program, “Everyday Matters,” is called “Adjusting Our Mindset,” or “the fulcrum and the lever.” In science, the law of the lever states that power into the lever equals the power out, and the ratio of output to…

In a pilot study with patients with multiple sclerosis, high-intensity interval training combined with resistance training improved physical capacity and quality of life in a pilot study of multiple sclerosis (MS) patients — whether or not they were disabled. French researchers at the University of Strasbourg assessed physical capacity, strength and quality of life before the training started, and then again after completing a 12-week exercise program. They divided participants into two groups: one of 18 patients with no disabilities, and a group of eight with disabilities. Participants followed a personalized exercise program involving both high-intensity interval training — a kind of cardiovascular exercise strategy alternating short periods of intense anaerobic exercise with less intense recovery periods — and resistance training to improve muscular strength and endurance. Scientists used a French version of the Multiple Sclerosis Quality Of Life-54 test — a questionnaire filled out by MS patients to measure health-related quality of life — with five additional questions. After the exercise program, women improved significantly in vitality, general well-being and physical health composite scores in the quality of life assessment, while men showed no significant improvements. Vitality and general well-being only improved in the group with no disability. Peak oxygen consumption improved by 13.5 percent, and maximum tolerated power — a measure of maximum energy that can be expended — by 9.4 percent. Muscle strength increased in both quadriceps and hamstrings. Women showed better improvements than men in peak oxygen consumption, maximal tolerated power, strength in both quadriceps and hamstrings, and quality of life. Both groups showed increased peak oxygen consumption and strength. “Our study has shown that high-intensity interval training combined with resistance exercise training induced an improvement in physical capacity and quality of life. Moreover, this study allowed patients, irrespective of their sex or EDSS [Expanded Disability Status Scale] score, to resume exercise autonomously,” the team wrote. "High-intensity interval training is well tolerated too and can be used in clinical rehabilitation with resistance training, in both men and women with and without disabilities."

I have a co-worker who can meet someone and 10 minutes later know their life’s story. Heck, she even bonded with a woman who rear-ended her in traffic the other day. I admire this skill and strive to cultivate it in my own life, but it certainly doesn’t…

The stress of caring for a family member with multiple sclerosis (MS) or another neurodegenerative disease may directly affect the quality of care, according to a study showing that poor caregiver mental health causes higher mortality rates among the patients they care for. The study, published in the journal Proceedings…

Last week, I shared details of Everyday Matters, a program by the National Multiple Sclerosis Society. This self-directed, multi-week program uses the principles of positive psychology. The readings, lessons, and exercises need not be completed in a particular order, but I am going to start my exploration of…

Religion and spirituality are personal, delicate issues for many. Various schools of thought exist, and I haven’t the desire or the ability to deem one more important than the other. Writing about religious and spiritual matters is at times taboo in an often secular world. I can, however,…

Multiple sclerosis patients taking Tecfidera, or dimethyl fumarate, were more productive at work than those on Copaxone or beta-interferon therapies, according to a study. Tecfidera also increased patients’ quality of life, researchers said. The study covered patients with relapsing-remitting multiple sclerosis, or RRMS. The four beta-interferon treatments were Avonex, Betaseron, Rebif,…

Heidi Redl was in the physically demanding job of ranching when a doctor told her in 2004 that she had multiple sclerosis. Reluctant to give up her physical capabilities without a fight, the horseback rider and runner from Williams Lake, Canada, searched for unconventional as well as conventional MS treatments. In…

Many years ago, not long after my MS diagnosis, my cousin gave me a “gratitude journal.” At that time, I was all too aware of what I was not grateful for. The thought of giving thanks was daunting. But the journal suggested writing down just three things a…

Earlier this year, I visited a physical therapist I’d seen way back in my running days to devise a home workout routine that could help me address not only foot drop-related issues, but also a routine I’d actually do. One of the challenges I have with PT is doing…

The National Multiple Sclerosis (MS) Society has selected research highlights from a recent MS conference in an effort to help make living with the disease less burdensome. Presentations from the May 24-27 annual meeting of the Consortium of Multiple Sclerosis Centers (CMSC) in New Orleans — which ranged from advice on smartphone apps to diet…

Like millions of other fans, I happily plunked down $13 to launch “Wonder Woman” into blockbuster status on its opening weekend. In fact, I was so excited that I purchased dress-up kits for my gal pal, Amy, and me. Yes, as 40-somethings, we attended a film resplendent…

At times it can be difficult to know whether the cognitive issues I experience are the result of aging or multiple sclerosis. According to The National Multiple Sclerosis Society (NMSS) more than half of those living with MS develop problems with cognition, and in some cases…

Note to readers: This is the last of a three-part series focusing on the valuable role Pilates has played in my life with MS. If you missed the first two, you’ll find them here and here. This column focuses on…

The public’s interest in essential oils (EOs) — their uses, benefits, and safety — has been on the rise for several years. The most common means of using EOs is through aromatherapy, which includes having a diffuser in your home and or carrying a personal diffuser with you. You’ll find…

Virtual reality (VR) technology is most commonly associated with gaming and entertainment, but it’s expanding into a variety of clinical and healthcare applications. The Ontario-based biopharmaceutical firm EMD Serono, Canada, is now using VR as an informational and educational tool to provide a more profound understanding of what living with multiple sclerosis…

Multiple sclerosis has a way of messing with one’s head. Whether it’s emotional or psychiatric disorders, fatigue, brain fog, or physical problems, there’s a lot to wrestle with. And to effectively battle this disease requires you to be in a certain state of mind. Let me give…

Like so many people with MS, Mariska Breland remembers the disease’s onset as a combination of strange, seemingly disparate maladies that included tingling in her left thigh, numb feet, skin that felt “too thick” around her toes, foot drop, and double vision. One left her…