relationships

At the start of all of this, when I was laid low in the hospital by what turned out to be sclerosis, I was visited by my mate Nigel. He is the king of sclerosis (I’ve written about our “ill” starred bromance in this column) and he offered this…

Every life has purpose. Every voice has power. I decided long ago to speak my truth. My advocacy journey has inspired me to share my experiences courageously, and to embrace all that I am. Advocacy is defined as public support for, or recommendation of, a particular cause or…

Relationships are a quagmire in and of themselves. Throw in a chronic, progressive disease, and you have yourself quite the ride. This ride has excitability, steady inclines, crescendos, fun and free times, steep ravines, and shake-ups. Inevitably, balance is restored. That pretty much sums up my marriage. Let me…

How B-cells Work to Promote T-cell Attacks on Myelin That Lead to MS Detailed in Study I keep a close eye on reports about B-cells and T-cells because they’re the targets of Lemtrada, which is my current disease-modifying therapy. (The DMT Ocrevus targets B-cells alone). So, this…

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…

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…

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…

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…

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…

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…

Most weeks with MS are downbeat. That’s hardly a way to capture a reader’s attention — all of us struggle. What we need is light to blow away the shade. Last night as I climbed the stairs to bed, my legs gave out with three stairs to go. Luckily,…

Pregnancy, including successful delivery or miscarriage, worsens symptoms of multiple sclerosis (MS), as well as onset of the disease, a retrospective study shows. Researchers found the same effect of pregnancy on neuromyelitis optica spectrum disorders (NMOSD), an inflammatory disorder of the central nervous system characterized by demyelination and damage of…

Last week, I wrote about climbing through grief. This week, I will focus on what I learned in the throes of the cycle of grief. Several people share the opinion that I do too much. My cousin often says that he wants me to say no to…

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…

The queue to get into Canterbury Cathedral in bright sunshine seems endless. The quandary of being Dracula strikes me — I’ll either fry in the sun or fry in a church set up during the Roman occupation of Britain! Luckily my condition is MS, so we seek solace…

It has been a while since I’ve written a column. Within one month, two of my relatives have passed away. Spiritually, I believe in eternal life. However, in my earthly existence, death has left its sting. Multiple deaths, physical pain, and disappointments have catapulted me into a cycle of…

I am a self-described homebody. I enjoy social gatherings and getting out, but I always look forward to coming home. Within five minutes of pulling into the garage, I am in sweats and a T-shirt. My demeanor immediately softens. Home is familiar, and in familiarity I find safety. Sometimes, safety…

A significant number of multiple sclerosis patients show signs not only of depression and anxiety, but also of alexithymia — an inability to describe or process emotional responses, a research group in Brazil reported. The study, “High levels of alexithymia in patients with multiple sclerosis,” published in the…

Have you ever had a friend, spouse, or even a doctor tell you that you’re imagining your MS pain, your fatigue, or even your sexual problems? “You’re not trying,” they might say. Or, “You just need to exercise.” It happens all the time for many of us, and it’s…

In July 2017, I participated in a Facebook chat for MS News Today entitled “The Importance of Support And Positive Influences.” The chat was created to prompt a discussion on the necessity of support and resources for a person living with MS or other chronic illnesses. And now…

A family wedding in the gardens of a grand country house some 30 minutes from Oxford sounds idyllic. And indeed it was. Not, though, for anyone in a wheelchair. A deep pebble driveway at the front was impassable. It took very strong men to drag me backward a few yards. Going…

Hurricane season began on June 1 in the Atlantic region. For people living along the coast, as I do, it’s time to plan for moving quickly. For people with mobility problems, planning is essential since, as you know, moving isn’t something that we do quickly. I wrote…

A survey of multiple sclerosis (MS) patients that looked at their sense of social identity based on their family relations — meant to help explain mood disorders like depression and anxiety seen in this population — found a clear link between the strength of family bonds and mood, a U.K. study…

Arguments over nothing and everything are, in my experience, induced by extreme stress. When my wife and I were at full bore working together, this often happened. Not at work — there wasn’t time — and we were professional. Domestically, what little downtime we had would often be spent…

Spring has sprung! As I look around, Mother Earth is in bloom. Trees are sprouting new leaves, plants are growing, and the grass is green once again. I love spring and all that it represents — hopes for new birth and rebirth. For those who are unaware, May is Mental…

National Nurses Week was earlier this month. I’m a little late saying it, but, “Thank you, nurses.” And doctors. I’m really a lucky guy. Lucky to have had fabulous nurses. Lucky to have had a couple of top-notch neurologists. My luck began in August 1980 with Dr. Stanley…

It’s easy to be lulled into a false sense of security, to think you’re the supreme authority in your life. And when that ersatz truth is ripped away, as it was for my husband and me the last week, it can be hard to regain your footing. I’ll spare…

We all have taken advice or read about how to manage our multiple sclerosis (MS) symptoms. And we can share with our doctors, spouses, children, or friends about our experiences. But a far better emotional therapy is empathizing with a fellow MS warrior. People can’t understand living with MS…

Biogen, a pharmaceutical company that markets half a dozen MS therapies, is accused of paying doctors to prescribe its medications. A former Biogen employee claimed that the company paid fake consulting and speaking fees to doctors who prescribed Avonex (interferon beta-1a) and Tysabri (natalizumab) in 2009 and 2010. The company…