living with MS

You’ve just “biked for MS” or your friends have just “walked for MS” and they’ve collected a lot of pledges. Maybe you sent out letters to your friends asking them to donate a little cash to help find a cure for this disease that has impacted our lives.

I love getting together with family and friends, volunteering at the golden retriever rescue, attending events and keeping my calendar full. It is fulfilling to make plans, but as many of you with MS know, it is a paradox. The very plans that bring hope and happiness also…

Many of you are considering making the switch to Ocrevus (ocrelizumab) as your disease-modifying therapy for multiple sclerosis. This is a switch I made recently. There are so many questions and unknowns about how this treatment might help me, and I’m trying to…

It took two years and many doctors to finally receive my MS diagnosis. Frequent painful sensations, such as burning, itching, stabbing, and tingling in my arm and shoulder, led my providers and me on a wild-goose chase in search of other problems. When my speech and balance were…

I live at the beach, but I can’t get onto the beach — not easily, anyway. My MS means that I need to use a beach buggy; sort of an electric wheelchair with super-big tires, to get around on the sand. For others who are not as fortunate as…

Horseback Riding Plus Standard Care Can Help MS Patients Improve Balance, Other Symptoms Absolutely, it can. I don’t need to read this study to know that because I’ve been there, done that. About five years ago, at 64, I got back on a horse for the first…

Beth Kantor, 42, now knows what it really means to get down in the dirt. For the past four years, she’s volunteered as a first-aid assistant at the annual Twin Cities MuckFest, a fundraising event that the National Multiple Sclerosis Society organized in suburban Minneapolis. But this year, Kantor decided it…

Our bodies are amazing creations, lovingly handcrafted by an infinitely powerful and creative God, and I never get tired of learning facts about how they work. For instance, did you know that 25 percent of adult bones are in the feet? Or that more bacteria are found…

Having not stood on a stage and attempted stand-up for some 30 years, I’m not in the habit of writing jokes for myself. Obviously, these days, I’d be a sit-down comic anyway, but I think my opening line would be a doozy: “As I self-catheterize, I’m probably the…

I’ve just added an app to my iPhone that’s designed to track how I’m doing day-to-day with my MS. Not only can the data it collects be useful to me and to researchers, the app also is fun to use. The app is called elevateMS. It’s…

In this chaotic world in which we live, it is hard to be still, to sit with nothing but our thoughts. There is always something to worry about or preoccupy our minds that never allows us to rest in the present. As I sit on the patio and write,…

Advocacy comes in many forms, and recently I wrote about what advocacy by individuals might look like. The other type of advocacy we have going for those of us with multiple sclerosis is the work done on our behalf by a large number of nonprofit organizations. Let…

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.

A multiple sclerosis study will collect information about patients' movement performance and symptoms from their smartphones, Novartis has reported. The study is aimed at evaluating in real time the daily challenges of people living with MS. The results may help researchers develop new ways to measure treatments' effectiveness, the company said. Novartis is partnering on what it has dubbed the elevateMS study with Sage Bionetworks. The non-profit research organization is developing new predictors of disease to accelerate health research. A cellphone application will allow MS patients to send information about their situation from anywhere. The app will use sensors to gather information on patients' movements. It will also assess functional performance tasks that participants engage in. Patients can also fill out questionnaires with the app. A division of Apple called the Apple ResearchKit platform developed the app. Those interested in participating in the study can download it here. The elevateMS app allows a smartphone user to register important features of their disease. It includes a symptom tracker tool that allows users to record their overall wellness. They can also get an overview of what's been happening to them on an activity dashboard. Patients, neurologists and disease advocates gave Apple's app team input that helped with the design. "As physicians, we always want to know how our patients with MS are doing on the treatments we prescribe," Dr. Stanley Cohan, medical director of the Providence Multiple Sclerosis Center in Portland, Oregon, said in a press release. "With the elevateMS app, study participants can frequently document their symptoms in a personal health story," said Cohan, one of the scientific advisors to the study. "In turn, this data may provide researchers with new ways to look at disease progression and treatment effectiveness." The elevateMS study is open to MS patients 18 years old or older in the United States who own a smartphone. Additional information about it is available at www.elevatems.org.

Footwear and shoes and journeys have been in my info stream (and on my mind) a lot lately. First, I stumbled onto a very fine column about shoes and MS written by Jennifer Powell (Exchanging a Sole for a Soul). Her essay resonated…

“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…

MS drug manufacturers are in the sights of two members of Congress The companies are Bayer, Biogen, EMD Serono, Novartis, Sanofi Genzyme, Teva, and Roche. U.S. Reps. Elijah Cummings and Peter Welch, two Democrats who sit on the House Committee on Oversight and Government Reform, are concerned about what they're calling dramatic price increases for some MS drugs produced by those companies. In a news release, the congressmen say the price hikes have come "without warning, cause, or justification." They've sent letters to the companies seeking information about their profits and expenses. The letters also ask for documents about pricing strategies, patient assistance programs, and drug distribution systems. Cummings and Welch point to an American Academy of Neurology study of drug prices as evidence that some pharmaceutical companies appear to be increasing the prices of their older, less expensive drugs to bring those prices in line with those of the newer, more expensive DMTs that are available today. This kind of practice is known as “shadow pricing.” The congressmen refer to this study as being a bit dated, as it was published in May of 2015. It reviews the published prices of nine DMTs over a 20-year period, ending in 2013, and shows that prices for those older, first-generation DMTs increased at an annual rate that was five to seven times higher than general prescription drug inflation. In their news release, the lawmakers also referred to a report from the National Multiple Sclerosis Society that included a chart of drug price increases since the approval date for each drug.

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.

There are some pretty humorous things that can happen to me because I have multiple sclerosis (MS). Believe me, I understand living with MS and how difficult it can be to find the humor in anything about MS most days! But then, other times I can see the comical,…

British military personnel are at significantly higher risk of dying from multiple sclerosis than people in other occupations, a study reports. University of Southampton researchers had done a previous study of mortality rates by occupation by checking records of residents of England and Wales. They noticed that the death rate among MS patients in the armed forces was much higher than that of people in other professions over three successive decades. MS has a genetic component but is also influenced by environmental factors, including vitamin D deficiency, smoking and certain viruses. Researchers wanted to learn why so many military people die of MS, and the causes. The team looked at the death records of men aged 20-74 between 1979 and 2010. They compared military people's MS-related mortality rates and death rates from all motor neuron diseases with those of other occupations. They also compared rates across social classes, which in the military presumably means lower-ranking enlisted people, higher-ranking enlisted people, and officers. They discovered that the MS-related mortality rate among military people was significantly higher than in other professions. The death rate from MS was also significantly higher than the rate from all motor neuron diseases in the armed forces. Interestingly, military people did not have a higher MS-related death rate when the team divided those in the study into three social classes or when they compared the armed forces mortality rate to those of similar occupations, such as police and fire services. The consistency of the findings, together with the high statistical significance observed, indicated that the results were not due to simple chance or a problem with the study method, the team said. They speculated that the higher military death rate could stem from the close proximity in which military personnel live and work, which could facilitate the transmission of infections that have the potential to cause MS. The results conflicted with those of a study that analyzed hospital admissions due to MS in a population of former military personnel. It reported no increased incidence of MS-related admissions in former military people, compared with non-military controls. Since such cohort studies are less prone to bias, the Southampton team called for more research on the topic.

My parents taught me at an early age not to judge others based on appearance. My mother would gently admonish me if I would stare or point at someone in a wheelchair or who had an obvious physical malady. While these basic manners…

Fatigue. Most people with chronic illness – especially MS — experience this. My energy levels vary from one day to the next. I am tired of being tired (pun intended). There are days when getting out of bed is challenging, and times when I literally have to force…

A patient satisfaction evaluation of three autoinjector devices for delivering multiple sclerosis treatments found that Bayer’s electronic autoinjector Betaconnect was the choice of 57 percent of the 85 people who took part in the study. Higher satisfaction with an autoinjector can lead to better adherence, or patients sticking with treatment,…

Believe me, I enjoy being active. As I’m sitting in a chair or a wheelchair, it may not appear that way, but I do. I have multiple sclerosis, and the fatigue and difficulty of moving can make it extremely laborious to be active. The thought of going on…

A bacteria present in the gut, called Prevotella histicola, prevented multiple sclerosis from developing in a preclinical mouse model, found researchers at the Mayo Clinic in Rochester, Minnesota, along with colleagues at the University of Iowa. Current research suggests that alterations to the gut microbiome residing in human intestines may potentially trigger inflammatory diseases such as MS. In an attempt to identify which gut resident bacteria are capable of modulating immune responses, researchers studied cultured small pieces of intestine tissue extracted from biopsies of patients with celiac disease. The team then isolated three bacteria strains and found that one of species — P. histicola — had the capacity to suppress MS in a preclinical animal model of the disease. “This is an early discovery but an avenue that bears further study," Dr. Joseph Murray, a Mayo Clinic gastroenterologist and the study's lead author, said in a press release. "If we can use the microbes already in the human body to treat human disease beyond the gut itself, we may be onto a new era of medicine. We are talking about bugs as drugs." By investigating how P. histicola modulated immune responses to suppress MS, researchers found that bacteria decreased the expression of two pro-inflammatory cytokines – interferon-gamma and interleukin (IL)-17. Overall results show that P. histicola has immune modulatory activity and can suppress abnormal immune responses, which ultimately prevent autoimmunity. This supports the idea that maintaining a healthy microbial community within our intestines is a potential therapeutic strategy for MS. "Our work is a classic example of a bedside-to-bench and potentially back to bedside study. Recent MS microbiome studies have shown the lack of Prevotella genus in patients with the disease and an increase when patients were treated with disease-modifying drugs," said Ashutosh Mangalam, the study's first author and an assistant professor of pathology at University of Iowa's Carver College of Medicine. "And it's not just for MS, because this may have a similar modulating effect on other nervous system and autoimmune diseases."

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…

As I write, I’m pain-free. This is important, but not for the obvious reason. I’m pain-free and can walk — or at least stumble — about as best as I’ve been able to manage of late. It’s not much, but I can be involved in family life and get…

Insurance companies want people to use generics, rather than the more expensive brand-name drugs, right? Maybe not. Because, at least in some cases, they’re doing just the opposite. Some patients are being forced to use brand-name drugs even when those drugs have generic equivalents. Not surprisingly, that means…

University of California medical school researchers are looking for multiple sclerosis patients who want to participate in an international study of the bacteria that live in our gut. The University of California at San Francisco team decided to study the gut microbiome after recent evidence suggested that it is critical in…

Many of us with multiple sclerosis have heard the saying, “I go to bed wired and wake up tired.” This is quite accurate, as fatigue is one of the most prevalent aspects of living with MS. So often I hear from well-meaning individuals who,…