living with MS

Parents of children with pediatric-onset multiple sclerosis (MS) report a lower overall quality of life than those whose kids have a condition marked by demyelination but is not a chronic disease, a study reports. The lifelong nature of MS makes all the difference, it said. MonoADS, like MS, is caused by…

This past weekend was a busy one. My husband and I flew to Las Vegas on Saturday morning, saw a concert there Saturday night, and then flew home Sunday morning. Yep. We spent 24 hours in ol’ Sin City, U.S.A. and eight hours on a plane to get there…

Now, I’m all for complimentary comments on my columns, and in the combative world the internet has engendered, the stroppy ones, too. But it’s when you lot start writing to each other that I know I’ve hit something. Which is a good thing, however irrelevant I then feel. A…

Last week, I flew home from San Francisco. As I walked up the jetway, I moved to the right and held the handrail to allow others to pass. Once in the airport, I proceeded to baggage while showing another passenger where to go. As we parted ways, he looked at…

Medical tourism is a term describing when people seek medical care by traveling from home countries to somewhere else. It’s an area of commerce that has existed for centuries, as people in ancient Greece once traveled to far away islands to visit healing gods. Medical tourism continues today, and…

Sexual problems are a frequent but unreported symptom of multiple sclerosis (MS) that affects other symptoms patients experience with this disease, including depression, a study reports. The study, “Factors associated with sexual dysfunction in individuals with multiple sclerosis,” published in the International Journal of MS Care. Sexual dysfunction is…

Spasticity scales may be insufficient to reflect the actual benefits of Sativex (nabiximols) treatment on spasticity symptoms in people with multiple sclerosis (MS), according to a small case series study. The results support the need to conduct a more extensive and functional examination to clarify treatment responses and help…

Cigarette smoking worsens shortness of breath and fatigue, increases the rate of hospital admissions, and fosters a sedentary lifestyle in patients with multiple sclerosis (MS), according to a new study. The research, “Effects of cigarette smoking on respiratory problems and functional levels in multiple sclerosis patients,”…

Well, it’s not a cure, but working hard sure takes my mind off MS. In fact, I’m so rushed off my feet (irony intended!) I’m not sure I have time to write this. But if I stop and ruminate, then my bedroom turns from a frenetic office into a…

Does your MS limit your ability to find a date? (Courtesy of Lemonayde) Dating isn’t a concern of mine, since I turned 70 earlier this month and have been happily married for 42 years. But younger, single folks with MS regularly post concerns about starting relationships on various…

A&W Food Services of Canada, a chain of hamburger restaurants, in partnership with the Multiple Sclerosis Society of Canada, raised more than $1.9 million at its 10th annual “Burgers to Beat MS” campaign Aug. 16. This is the largest amount the campaign has raised. To celebrate Burgers to Beat MS campaign,…

Today, I tried to run. In my mind, I saw myself running with fluidity. I felt a weightless ability to lift, then cycle each knee and foot in perfect rotation. I felt my foot lift up and off the ground. My drop foot prevailed, and I fell. Other than injured pride…

Medical cannabis has created a dilemma for medical providers who care for people who might benefit from its use. I’ve been thinking more about this lately because my home state of Ohio will have legal medical marijuana dispensaries starting on Sept. 8. The law passed in 2016, and it…

Tecfidera (dimethyl fumarate) and Gilenya (fingolimod) are equally effective in treating multiple sclerosis (MS), but Tecfidera shows higher rates of discontinuation, according to a real-world study. The study, “Discontinuation and comparative effectiveness of dimethyl fumarate and fingolimod in 2 centers,” was published in the journal Neurology Clinical…

Researchers at Duke University are recruiting adults with multiple sclerosis (MS) for a study evaluating whether the use of a smartphone app that collects data can help capture the disease experience, improve communication with clinicians, and further an understanding of MS. The disease’s complex and varied symptoms means each patient…

Physical exercise fights fatigue and depression in patients with multiple sclerosis (MS), a new study reveals. Remarkably, these positive outcomes in psychological health can be achieved without significant alterations in the patient’s body weight or body mass index (BMI), further supporting the idea that exercise could be…

I knew I had MS nine years ago when I went back to see my neurologist. I’d had the lumbar puncture to prove it definitively, and I displayed all the requisite symptoms. The only question I had was, “Will this lead to me being in a wheelchair?” The…

Aug. 1 was a busy day around our house. Backpacks needed to be loaded up, breakfasts consumed, pictures taken, and shoes tied tightly before the bus arrived. Yes, it was the first day of school. (I could talk about how ridiculous it is for kids to be going back to…

I get my medications the old-fashioned way. When I need to fill a prescription, I either go to the drug store or use a mail-order pharmacy — and usually, I have a copay. Sometimes the copay is just a few dollars, but sometimes it can be a few hundred.

I can describe myself with a myriad of words: kind, funny, smart, quirky, and stubborn, to name a few. So many words are descriptive of my persona; I almost felt safety among them. Almost. I have always preferred paved road to dirt; my place was to shine the already…

Ohio, my home state, is wrestling with the nuances of medical marijuana laws that become effective on Sept. 8, 2018. My husband’s work email had an important notice from the Bureau of Worker’s Compensation (BWC) about this pending change, and as I read it, I thought that nothing really…

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, “…

When I was younger, I never thought about trying holistic therapies to aid healing. Looking back I wish the medical community had embraced these therapies as potential treatments for MS symptoms. My first few years of living with MS were an incredible struggle; there were…

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.

The neurologist who treats my MS is a woman. So is my primary care physician. I wouldn’t have it any other way, and an article in The New York Times makes me feel my decision is the right one. Patient studies tell the tale The Times article points…

Everything takes so much damn time! I’m strangely working — or at least doing things I purport as work, such as this column. That’s no different than before MS; I still have the inclination to prevaricate or find something inconsequential to ruminate over, like the state of the Turkish…

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…

Most patients with multiple sclerosis (MS) are satisfied with the conditions of their intravenous therapy (administered directly into the bloodstream) and are very aware of the therapy’s safety, according to a small Macedonian study. Also, establishing a specialized infusion center would substantially increase intravenous treatment satisfaction and adherence. The study, “…

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…

The journey of chronic illness has taught me that our families are greatly affected by our illnesses. Spouses, parents, siblings, and many others can attest to their personal stories of loving someone who is chronically ill. My inspiration for this week’s column was a discussion I recently had with…