relationships

It’s spring — at least, it’s supposed to be — so getting stuck at the airport due to snow was the last thing I expected during a recent trip to Grand Rapids, Michigan. But that’s exactly what happened to me on Sunday. I sat with thousands of fellow passengers,…

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…

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…

On Good Friday, my family and I took a three-day road trip to lay my husband to rest. Our goal was to honor his last wishes and set his ashes free in the wilderness that he so loved. My husband enjoyed going archery hunting almost every fall, until a…

Let me introduce you to my wife, Jane, by cheekily lifting the title “Be My Wife” from possibly the only accessible track off Bowie’s seminal ’70s album, “Low.” Through these weekly columns I’ve mentioned her often enough, but I’ve never formally introduced her. Mea culpa. I didn’t have…

Have you ever been touched by the actions of one of your doctors? I hope we all have experienced special moments with our care providers because these times break down the authoritarian nature of medicine and allow us to interact as people rather than patients. A heartwarming moment took…

I spent the majority of my life as a people pleaser. From the time I was young, I equivocated “yes” with likability; please and be pleased. As the years passed, compromising my own needs became second to meeting those of others. While I genuinely enjoy…

Cigarette smoking increases the relapse rate in patients with relapsing-remitting multiple sclerosis who are being treated with interferon-beta, a study suggests. The findings suggest that RRMS patients who smoke may have fewer relapses if they quit. An article on the results, “Smoking affects the interferon beta treatment response in multiple sclerosis,” appeared in the journal Neurology. A number of studies have looked at the link between environmental and lifestyle factors and the risk of developing MS. These factors include how much sunlight and vitamin D patients get and whether they have an Epstein-Barr virus infection. Cigarette smoking is a well-documented risk factor in MS, but most of the studies on it have focused on the link between smoking and MS, or the link between smoking and the  disease's progression. “Studies that addressed the relationship between smoking and disease activity in RRMS are rarer,” the researchers wrote. The team decided to investigate whether smoking during interferon-beta treatment would affect relapse rates. Previous research had set the stage for the study by showing a link between smoking and gene mutations that make people more susceptible to developing MS. The mutations were in the HLA and NAT1 genes. The team looked at DNA from 834 RRMS patients in the Danish Multiple Sclerosis Biobank who were treated with interferon-beta. Well-known brand names of the treatment include Rebif, Avonex, and Plegridy. There are also other brand names and biosimilar drugs. Researchers also looked at patients’ medical records two years before they started on interferon-beta. Before making any conclusions on possible links between smoking and patients' relapse rate, the team adjusted for patients’ sex, age at the start of treatment, and number of relapses in the two years before treatment began. Their key conclusion was that smoking increased by more than a quarter the number of relapses in patients on interferon-beta therapy. “Each pack of cigarettes more per day during IFN-β [interferon-beta] treatment increased the number of relapses by 27%,” the team wrote. The researchers found no association among smoking, relapses, and mutations of the HLA or NAT1 genes. “Our results confirm that lifestyle factors are important in MS, suggesting that smoking cessation may be associated with a reduction in disease activity,” they wrote. “Although not formally proving that smoking cessation will decrease disease activity in RRMS, the results should encourage physicians to inform patients with MS about the harmful effect of smoking and increase focus on smoking cessation,” they observed.

As an advocate for the multiple sclerosis community, people often ask me what it’s like being a mother while living with MS. My quick response is, “Joyous!” But I understand the questioner is looking for something more. They want to know how to…

Well, I’m usually fairly upbeat, but this time, it’s going to be beyond me. We’ve all had relapses — I think I’m in the fitting cliché of being on my last legs. I can, on a good day, transfer on my own from the bed to my trusty…

I am a sensitive individual by nature. Good, bad, or insignificant, that is part of my genetic makeup. I cry when the dog gets hurt in the movie, at every episode of “This Is Us,” and every time I hear “O Holy Night” at Christmas Eve services. While sometimes endearing,…

“What is wrong with you?” I have been asked this question numerous times by significant people in my life. The most recent was a few days ago. The question usually occurs during the times I have an emotional “meltdown.” Whenever I hear it, I get defensive, thinking that I…

I had the flu for several days, and it was disastrous. So, I did not write last week. I hope you missed the column as much as I missed writing it and hearing from you. Several of my friends have the flu as well. This is an awful…

I write in an effort to offer enlightenment. Yet, so often I find I am the one to receive an education. Such was the case with my column on relationships and MS — or more pointedly, the feedback I received. While MS has…

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…

Last updated April 25, 2023 At the intersection of hope and despair is a bench to sit and rest. At least, I hope there is. The bench gives us an opportunity to take a breather from the stresses of the world. It’s a chance to sit and think about which…

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…

The other day, as I cruised around various MS internet groups, I came across a lament that I’ve seen before. But this one, for some reason, jumped out at me. A woman with MS wrote that she was “fortunate” that her RRMS symptoms were relatively minor: fatigue, numbness in…

Have you been in this Catch-22? You had great medical insurance when you were working. But, you’re not working anymore. Your insurance now comes with a $6,000 deductible and it doesn’t cover any medications. That $6,000 is about a fifth of your yearly income. You took early retirement because of…

Relationships are work. When you add in a chronic, progressive disease, the work becomes exponential. This is not to say work is a bad thing, as we reap immense rewards when we put effort into anything. Rather, anything worth doing…

We endured another devastating loss this week. My beloved sister-in-law, a cancer survivor whom I affectionately called sister, passed away. Although we knew her disease was terminal, she passed away unexpectedly in her sleep. Death is never easy, and no matter how much we try, we cannot entirely prepare…

My life has been in limbo for several months and it’s been a dark and scary place to be. One quickly learns that life can be unpredictable when living with multiple sclerosis. Each day can bring different challenges and life will never be…

One year ago, I wrote “Grief, Self-preservation and Multiple Sclerosis.” My…

This year, I wrote several articles about gut health because, in addition to MS, that’s what I’m currently battling. Writing is cathartic, so when an issue hits close to home, pouring words onto paper … er, a laptop, is a godsend. It’s like having a…

You wouldn’t think that a guy who was diagnosed with MS more than 37 years ago would still be able to learn a thing or two about his disease. But that’s exactly what I did while on vacation about a week ago. I guess I really did know…

The Christmas season is upon us — decorations, shopping, and get-togethers dominate the month of December. If you tune into the Hallmark channel you will see this season as synonymous with love, laughter, and an abundance of cheer. With joy the prevailing theme it can be difficult to experience…

Whenever I turn the pages of my wall calendar to December, I look at the word itself ― DECEMBER ― and my heart fills with joy. And admittedly a little dread. Joy, because my husband and son have birthdays a week apart, it’s…

My journey in life has allowed me to connect with and meet people from all over the world. For this, I am blessed. I’ve met many diagnosed with MS and other chronic illnesses. All of our experiences are different and we have varying levels of support. A little while…