The temperament of patients with multiple sclerosis (MS) can have a significant impact on their health-related quality of life, a study suggests. The study, “Health-related quality of life in multiple sclerosis: temperament outweighs EDSS,” was published in the journal BMC Psychiatry. MS patients’s quality of life…
Quality of life
In general, multiple sclerosis (MS) patients are able to make and sustain healthy lifestyle changes associated with a better quality of life, a study shows. The study, “Health outcomes and adherence to a healthy lifestyle after a multimodal intervention in people with multiple sclerosis: Three year follow-up,”…
Awareness is, at times, barely imperceptible, a quiet conviction that lies within. As with most truths, they are self-evident long before we decide to own them. And when we do, it is as if we have opened our eyes for the first time. My eyes are open. Living with progressive…
Treatment with Gilenya (fingolimod) is associated with treatment satisfaction, which, in turn, is linked to a better quality-of-life in patients with relapsing-remitting multiple sclerosis (RRMS), a study has found. Gilenya, an oral disease-modifying treatment (DMT) for RRMS developed by Novartis, has been available in France since 2011. Studies have…
My Scars Are Beautiful
Our life experiences shape and define who we are. While some wash over us and dissipate, others leave indelible impressions. Both emotional and physical, our scars hold our past and influence our future. We are the totality of these scars and their narrative is powerful. Each is a chapter in…
As some have said, “Pain is inevitable; suffering is optional.” I believe I am an optimistic, grateful, and spiritual woman. With that said, I must acknowledge that I have an irresolute reaction when I hear that suffering is optional. Suffering is defined as the state of undergoing pain, distress,…
I Am So Much More than My MS
Every personality test and trait indicator quiz I take tells me the same thing: I’m a polymath. Basically, it’s a fancy Greek word meaning “a person of wide-ranging knowledge or learning.” I take delight in gathering interesting facts or stories. I take pleasure in learning for learning’s sake. (Hence,…
Let Go and Live
Six weeks ago, Abby, my golden retriever, had a seizure. I was sitting behind her when she began to rock; I have never moved so fast. I could only see the bloodshot whites of her eyes as she whimpered lightly and I began to wail. I intuitively hugged her,…
It’s the Little Things
Really big things are going on in the world. WW3 is again flagged as a possibility. My world is considerably smaller. It’s mostly my bedroom. I can get out of it, but it takes a considerable effort. In the last seven days, I only exited it once. Last night, I…
Research that points to a potential blood biomarker of multiple sclerosis (MS) severity, relates cognitive difficulties to patients’ employment and other measures of socioeconomic status, and one-year results of an ongoing clinical trial are among data presentations planned by Biogen for the annual meeting of the American Academy of Neurology (AAN). This year’s…
Back to the World
The stars sometimes align, even for us atheists. My son was making a fleeting weekend visit from his last year at his university. It’s all we were going to see of him over the Easter period. He’s taking it very seriously and aiming for top grades in math. The week…
A Message of Hope from a Firefly
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…
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…
Online training in meditation based on mindfulness can improve the quality of life for multiple sclerosis (MS) patients while easing depression, anxiety, and sleep problems, a study conducted in Italy reports. These findings add to the growing body of evidence that interventions able…
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 made an unexpected appearance at the emergency room this week, which culminated in a short hospital stay. I have been ailing for weeks, making the conscious choice to live each day as best I can. Managing pain and combating emotions and illness in everyday life is difficult, as…
Having four grandchildren, I watch my fair share of kids’ movies. Most of them offer positive life lessons for growing minds while remaining entertaining. Recently, I watched the movie “…
I was throwing the ball for my golden retriever when it bounced onto an unreachable ledge. I watched her become antsy for a ball she could see but not reach and wondered what she would do. Her frustration gave way to a solution as she jumped from…
“Today we’re going to talk about the Four Ps,” Stephanie says. “You’ve probably heard of these already, but let’s go through them anyway.” I look at her the way a dog tilts its head when it hears a high-pitched whistle. Like…
Living Just for Today
Last week, I wrote about the incessant emotions of MS and chronic illness. This week, I will focus on living in the present moment. Remaining on a quest to continue the depiction of real life with MS for Multiple Sclerosis Awareness Month 2018, this week’s column will…
Mahatma Gandhi once said, “There is more to life than increasing its speed.” That’s not a lesson modern American culture has taken to heart, is it? Seems like we’re more inclined to take Daft Punk’s advice and do everything “Harder, Better, Faster, Stronger.” And that’s all well and…
I have been contemplative these last few days, lost in thought regarding the state of the MS. I am not sad or upset, simply in observation mode. Reaching for what may have precipitated this gentle melancholy, I realize I am on the precipice of my 49th year. While MS continues…
It’s frightening to feel sick most of the time. Frightening, scary, overwhelming, unnerving, and hellish. Whichever negative words you choose are the right ones to describe how it feels to live with MS. People with MS are snowflakes, and our emotions are quite often the same. After three-plus…
New York researchers are doing a pilot study of whether a Mediterranean diet can reduce multiple sclerosis symptoms and improve patients’ quality of life. Dr. Ilana B. Katz Sand, an assistant professor of neurology at the Icahn School of Medicine at Mount Sinai, is leading…
15 Multiple Sclerosis-Inspired Tattoos
Getting a tattoo shouldn’t be taken lightly. It’s a piece of art that will be on your body for life and therefore, should represent something that’s near and dear to your heart. With that in mind, it’s no surprise that many who suffer from a chronic illness choose to add permanent messages…
The Power of Resilience
After taking a tumble this week, I am reminded of the power of resilience. Dictionary.com defines resilience as: “1. the power or ability to return to the original form, position, etc., after being bent, compressed, or stretched; elasticity. 2. ability to recover readily from illness, depression, adversity,…
Intimacy is defined as close familiarity and/or friendship. It can also describe an act. We have intimate relationships with the people in our lives. Those intimate relationships strengthen us as we travel the arduous path of chronic illness. This week is Valentine’s week, so I thought I’d discuss the…
At the end of each passing year, I like to give a theme name to the fresh new year. So last year when my sister Kathy asked me what I would dub 2018, I thought for a few moments and said, “The metamorphosis of change.” I previously didn’t have…
The stigma of multiple sclerosis can increase patients’ risk of depression, but a socially supportive environment, a sense of belonging and a sense of independence can help ease the problem, a study Penn State University study reports. Researchers have…
Who decides how we choose to chronicle our journey of illness? I have thought about this for the past few days. Many people believe that sharing the negative aspects of illness exacerbates fear and pessimism. The mindset is that if our words are inconsistent with hope and optimism, we…
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