quality of life

Multiple sclerosis patients should be routinely assessed for chronic and, especially, neuropathic pain in order to properly diagnose and treat this condition, which appears to directly affect the degree of a patient's disability, a new study reports. Pain is one of the most disabling clinical symptoms of MS, associated with suffering, distress, and lower quality of life. Many studies have investigated the prevalence of chronic pain in MS patients but with highly varying results: estimates range from 29 percent up to 92 percent. This disparity is likely due to methodological differences between the studies, as well as differences in the studied population. The result is the prevalence of pain in MS is still unclear, and underdiagnoses of pain in this patient population likely. Researchers in Italy conducted a single-center study to determine the prevalence and characteristics of chronic pain, defined as constant pain for more than three months, in a population of MS patients. Pain was evaluated using validated tools, and the results were analyzed in relation to clinical features such as disease duration and disability. In total, 374 MS patients with different disease severities were assessed for pain. Results found an overall prevalence of chronic pain of 52.1, most frequently affecting the lower limbs. Neuropathic pain, which refers to pain resulting from a lesion or disease impacting the sensory nervous system, was the most frequent type of chronic pain, affecting 23.7 percent of the patients analyzed. Pain intensity was also found to be significantly higher in patients with neuropathic pain compared to those with non-neuropathic pain. Researchers measured patients' disability using the Expanded Disability Status Scale. They determined that patients with chronic pain, and especially those with chronic neuropathic pain, had significantly higher EDSS scores (meaning greater disability) than those without such pain. Both these patient groups were also more likely to be on long-term pain medications: 33 percent of MS patients with neuropathic pain, and 24 percent of those with chronic pain. These results indicate that pain is underdiagnosed and undertreated in MS patients, and a factor that may contribute to increased disability. “Our results suggest that clinical disability is higher in MS patients with chronic pain and, in particular, in those with neuropathic pain,” the researchers concluded. “The present study supports the routine assessment of neuropathic pain in MS patients.”

Gratitude is defined as the quality of being thankful; a readiness to show appreciation for and to return kindness. By definition, we can infer that, in addition to it being a quality, it is also an act. Gratitude is not an exact science, it takes practice, development, participation and…

A diet rich in vegetables, fruits and whole grains may decrease symptoms and lessen disease progression in patients with multiple sclerosis (MS), a study suggests. The report, “Diet quality is associated with disability and symptom severity in multiple sclerosis,” appeared in the journal Neurology. “People with MS…

I find it incredibly ironic that the day after we pause to give thanks for whom and for what we have, we are breaking down doors and fighting one another in the name of Black Friday. While easy to proclaim in the fervency of the season among family…

  We all have heard that physical activity is important for maintaining health, strength and well-being. It may be even more important for people with MS. Exercise has been shown to improve balance, strengthen brain connections, improve sleep, reduce pain, help…

The road to living a grateful life is not always a smooth and paved one. There are curves and roadblocks that can send any thoughts of gratitude far off into the distance. Life is constantly changing…

Because I come from a retail family — one that, for decades, put in long hours behind cash registers and in stock rooms — Christmas is not a holiday we particularly look forward to arriving. We enjoyed it, when the day came. But often in my youth, we were…

I love photographs and have them strewn about and framed throughout the house. From grandchildren and goldens, holidays and travels, each holds a cherished memory. I am happiest taking photos and have cultivated somewhat of a hobby doing so. As I have gotten older, I have (gratefully) discarded the…

People with multiple sclerosis (MS) who quit smoking have better health outcomes than those who continue. Therefore, MS-related costs can be reduced by encouraging smokers to quit. Similar results were observed in MS patients with healthy vitamin D levels, Maura Pugliatti, from the University of Ferrara, in Italy, said Friday in a presentation at the…

Maintaining friendships can be challenging for those with a chronic illness. It may be difficult for friends to understand the changes that take place because of MS. Some changes are quite sudden and visible, others sneak in slowly. Increased fatigue or pain, I find, are most difficult for friends…

Although a smile costs nothing, it can be just what a person needs. Many have encouraged me throughout my life with a smile, thus teaching me how powerful the act of smiling can be. Someone complimented me on my smile this week. I smiled again with a heartfelt…

There are two doctors. Here’s your choice: One has a patient-centered approach to care, spends more time with you during appointments, and is more empathetic with your concerns. On average, patients under this doctor live longer. The other doctor spends less time in the appointment, struggles to listen…

Both of my sons — and, if I’m being honest, my husband — love Kraft Macaroni & Cheese. Yes, that horrid stuff that comes in a blue box, the kind that you make with a packet of powdered cheese, milk and butter. Whenever I put some on the table…

Pain, walking problems and fatigue are factors that most strongly lower self-perceived health in multiple sclerosis (MS), researchers at the New York University Langone Medical Center have found. This challenges current treatment approaches focus mainly on physical disability. It suggests that “invisible disability” may be more important to how patients…

I am an avid dog lover and very involved in volunteering with the golden retriever rescue here in Southern California. On any given day, you will find my 8-year-old rescue, Abby, here along with two to three other happy golden retrievers. I may have  rescued Abby physically, but there…

When talking about MS research, we tend to focus on drug development because improved therapies, and even the cure for MS, will come from pharmaceuticals. But what do we know about other MS research that doesn’t involve taking a pill or enduring an injection? I’m talking about those…

A clear association was seen between the substantial pain that multiple sclerosis (MS) patients experience and lifestyle choices that either augment or ease that pain, like smoking habits, exercise, and diet and weight, researchers in Australia report. Common co-morbidities associated with MS, such as depression, anxiety, and fatigue, were also…

Our world is chaotic right now. I literally have to disengage from social media and periodically turn off the news just to rejuvenate my spirit and find some peace. It is difficult to remain positive in a pessimistic society. We are divided by politics and spiritual beliefs. We are…

“I’m sorry, these files take forever to copy,” the woman at the registration desk says, breaking the silence that had settled between us while she uploaded MRI scans from the CD I gave her moments earlier. “I know it can be a…

People with multiple sclerosis (MS) often face geographic barriers that end up limiting their treatment options. That has led a Case Western Reserve University researcher to test online- and teleconference-based methods of reducing fatigue and improving patients’ quality of life. Matthew Plow, assistant professor at the university’s Frances Payne Bolton…

I posted this meme on social media last week with the caption “Current Life Status,” hoping a laugh might help matters. I’m sorry to say things didn’t improve afterward. I’m not a Debbie Downer or a Sad Sack by nature, and I don’t often write about my struggles here…

I find it funny when people ask how and why I am so positive and happy. Am I supposed to be sad and negative just because I have multiple sclerosis? There are certainly days when the pain and/or side effects get me down, but gratefully, these are exceptions…

Courage is a recurring theme in my column. Many of us are familiar with the cowardly lion from the Wizard Of Oz. The lion itself is an animal known for its strength, beauty and valor. Thus, to think of a lion as a coward appears to be a…

Laughter really is among the best medicines when it comes to multiple sclerosis, says Yvonne deSousa, an MS patient, humorist and author who plans to share her tips on integrating humor into daily living, in a free webinar organized by GeneFo. The webinar, which will also discuss research into laughter therapy for MS, will take place Sept. 13 at 1 pm EST (6 pm in the United Kingdom). Scientists are increasingly aware that emotions play a crucial role in determine progression rates and outcomes of chronic diseases. This has led researchers to study how therapies including humor and laughter might contribute to improve patient's well-being. DeSousa, a native of Cape Cod, Massachusetts, has been nominated for a WEGO Health Hilarious Patient Leader Award. She promises to offer hands-on advice on how to “find the funny, de-stress, and enjoy a good laugh” despite the reality of living with a chronic and debilitating condition such as MS. The online lecture will also focus on the biology of how laughter can improve patient outcomes. Research shows that laughing affects immune and endocrinological processes, while increasing tolerance to pain. Laughter also counteracts anxiety and depression. These factors, deSousa pointed out, are all crucial in MS, and she should know. The comic has taken a humorous approach to her own illness from the start, and now runs a blog that recently made the Top 50 MS Blog list. She's also written a book — called MS Madness — on the topic. The webinar will also introduce a research project led by Dr. Theodore Brown that now seeks MS patients for a study of how laughter therapy affects mood, stress and self-efficacy. Researchers hope these types of studies will encourage doctors to incorporate humor-based practices into common care protocols for MS. Details of the research program will be shared with webinar attendees. Those wishing to participate in the free webinar — and receive a video recording by email later — can register by following this link.

Grief can cut like a knife and pierce a hole in your heart that never fully heals. I’ve heard people say they prepare themselves after learning about a loved one’s terminal diagnosis, but how? How do you prepare to say a final goodbye? You can brace…

The Multiple Sclerosis Society of Canada — with input from both experts and patients — has developed a "wellness toolbox" with strategies to help multiple sclerosis (MS) patients cope with their disease. Wellness is becoming a big area of research, particularly in patients with chronic diseases such as MS. With an estimated 291 cases per 100,000 inhabitants in 2013, according to the Multiple Sclerosis International Foundation, Canada has the world's highest incidence of MS. While pharmaceutical and scientific research are advancing in the therapeutic area, studies are also underway to determine the contribution of wellness factors such as nutrition, physical activity and emotional well-being -- to quality of life for MS patients. With that in mind, the Toronto-based MS Society of Canada conducted a Wellness Survey, which led to the launch of the Hermès Canada | MS Society Wellness Research Innovation Grant. These grants are awarded to scientists conducting research on MS and wellness factors. The University of Saskatchewan, which received one such grant in 2016, investigated the effect of Pilates in people with MS. The study recruited 30 MS patients. Half took Pilates classes twice a week and massage therapy once a week, while the other half only did once-a-week massage therapy. Results showed that patients who took Pilates classes saw an improvement in their overall condition, compared to patients in the control group. To create its wellness toolbox, the MS Society of Canada received input from MS patients about strategies that have helped them manage the disease and live a full life.

Therapeutic horseback riding, also known as hippotherapy, when combined with standard care regimens significantly reduces fatigue and spasticity in multiple sclerosis. It also improves balance and quality of life, according to a German study. Hippotherapy takes advantage of a horse's natural movements to develop a patient's muscle tone and improve breathing, while strengthening the torso muscles. Horseback riding also improves balance control, coordination and gait, while boosting a patient's social communication skills, which can benefit self-esteem. “Hippotherapy as a complementary treatment can be defined as one-patient-one-horse physiotherapy treatment with and on the horse,” researchers wrote. Team leaders Vanessa Vermöhlen and Petra Schiller of the University of Cologne evaluated the benefits of half-hour weekly sessions of hippotherapy in combination with standard care. They randomly assigned 70 MS patients with lower limb spasticity to either an intervention group that did 12 weeks of hippotherapy, or a control group that received only standard therapy. The team evaluated the impact therapeutic horseback riding had on balance, measured by the Berg Balance Scale (BBS). They also measured its effect on other multiple sclerosis symptoms and signs, including fatigue, quality of life, pain, and spasticity. Overall, the team found that those who received hippotherapy plus standard care improved their BBS scores by 4.8 points after six weeks of therapy, and 6.4 by the trial's end. These increases were significantly higher than those achieved by the control group (2.9 points at six weeks and 3.1 points at 12 weeks). Although this represents a difference of only 3.3 points after 12 weeks, it still reflects a relevant change in patients' balance control capabilities, the authors said. In addition, the researchers also recognized significant improvements in fatigue, spasticity and quality of life of those undergoing hippotherapy plus standard care compared to those on the control group. The observed beneficial effects of hippotherapy validate previous reports that showing that activities with horses could help adults and children improve their balance, gait and psychomotor abilities.

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.