People with multiple sclerosis (MS) value exercise and physical activity far beyond the concept of “staying fit,” and consider exercise essential to maintaining a reasonable level of independence and being able to engage in social activities, a small U.K. study based on interviews reports. The study, “…
quality of life
Dysphagia, or problems with swallowing, is common in patients with multiple sclerosis and significantly reduces their quality of life, according to a new Australian study. Symptoms such as coughing and choking, and mental health issues related to eating or drinking, are common in this patient population, the data show.
Over the past week, I’ve come across two short films that are designed to show what it’s like living with MS. But they have two very different approaches. Interested in MS research? Sign up…
Getting Out, Despite the Crowds
Last week, my husband and I attended an outdoor concert in a small venue that we used to regularly attend just a few years ago, before my MS affected my mobility. Our last concert there was two years ago, and although I was skeptical about going, the weather was perfect, and…
Treating Patients’ Perceived Stress and Poor Sleep Important as Both Fuel Depression, Study Reports
Patients’ perceptions of stress and sleep quality are both linked to their sense of cognitive difficulties and depression, and focusing on these perceptions may be a way of treating depressive symptoms in multiple sclerosis (MS), a study reports. The research, “Perceived cognitive deficits and depressive symptoms in…
I knew it was going to be one of those days as soon as I opened my eyes. I woke in some sort of half-start, my eyelids popping abruptly open as I looked up at the ceiling. Something seemed…
Living with multiple sclerosis (MS) could be compared to having an annoying house guest who never leaves. You can tolerate them at first, but soon your nerves and resilience wear thin. You try to accept and adapt to the house guest, but you never give up on trying to…
There are many things that confuse me, particularly in the medical area. Perhaps that’s why I am more comfortable thinking about MS patients’ quality of life rather than being into the hard science of medicine and understanding how medicines work. I’m thinking in particular of botulinum toxin, more…
Loss of health-related quality of life is caused mostly by balance problems, muscle stiffness, and depression in people with relapsing-remitting multiple sclerosis (RRMS), and for those with progressive MS, the causes are muscle rigidity, paralysis, weakness, and pain, according to a…
What Are You Living For?
Maybe it’s because I’ve been listening to too much Jackson Browne lately, but I’m distressed by the state of the world these days. And it’s not the big-ticket stuff like politics or social dysfunction that’s got me worried, either (though both take turns keeping me up nights). It’s…
Changes in the brains of patients with clinically isolated syndrome (CIS), the first clinical presentation of multiple sclerosis (MS), may be partly responsible for depressive symptoms and reduced quality of life in these patients, a study shows. The study with that finding, “Health-related quality of life, neuropsychiatric…
Giving Your Brain a Good Stretch
I turned 40 this year, and it seemed like a mighty fine time to stop and take stock. After all, I’m at the midway point, and if I want the second half of my life to be as fun and productive as the first, I have to make…
RRMS Patients Show High Levels of Satisfaction and Adherence to Gilenya Over 2 Years in Danish Study
People with relapsing-remitting multiple sclerosis in Denmark show high rates of adherence to treatment with Gilenya (fingolimod), and give the therapy high marks in terms of satisfaction and quality of life, a long-term study of its use by RRMS patients reports. The study, “High treatment adherence, satisfaction, motivation,…
Stress and MS: Time to Chill
How do you manage stress when you are stressed? How do you avoid letting stress dominate not only your mind but also your physical being? I wish I knew. At my first clinic following my MS diagnosis, the doctor warned me about stress and its effect on MS. I…
I started out in my professional life as a journalist. This only lasted about eight years and feels like a lifetime ago — which it was. Though I was not a news hound, I learned to smell a story. Last week’s column, “A Tale of Two Halves,” juxtaposed bad MS…
When you have MS, finding a way to dress for success means more than just looking sharp. It means dressing to both look good and feel good about yourself while wearing clothing that’s easy to wear. Finding those clothes takes a little more effort than simply going into a…
I’m doing all I can to remain calm and keep stressors at bay all in the name of wellness. So I’m trying to meditate at least five minutes a day — find a quiet room to sit tall, close my eyes, and focus on my…
Researchers at the University of Missouri found that a lack of appropriate clothing designed for people with disabilities, caused by accidents or chronic diseases like multiple sclerosis (MS), can be a barrier to participation and a sense of inclusion in the workplace. Because workplace attire can be specific and…
I just saw a couple of “golden tumbleweeds” swirl past my feet. My attempts at keeping a clean house are no match for Abby’s ever-falling golden locks, and I am OK with that. There was a time when those two balls of hair would have elicited profound anxiety. The anxiety…
My philosophy about living with MS is written on a plaque hanging on the wall in my home. It reads: “Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.” Olga Bobrovnikova doesn’t dance in the rain. Instead, she plays the piano.
The royal blue kite struggled to stay in flight; the winds remained fickle on our day at the beach. I was mesmerized while watching a man and woman so fervently trying to manage the small diving diamond in the sky. The more I watched, the clearer the metaphor…
Yesterday, the clerk at the grocery store asked how I was feeling. Having known her for 15 years, I glanced at her over the rim of my sunglasses and we shared a knowing laugh before moving onto inane topics. She knew exactly how I was feeling without my saying a…
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…
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,…
Recommended Posts