relationships

In a nationwide survey of caregiver abuse and neglect among Americans with advanced multiple sclerosis (MS), more than half of respondents reported some form of mistreatment, with psychological and financial abuse being the most common. Having a caregiver with a mental illness was the greatest risk factor for mistreatment, the survey…

My multiple sclerosis (MS) was diagnosed 40 years ago in August. I never kept my MS a secret, but I didn’t go around advertising it, either. I’ll bet, for the first 20 years or so, very few people at work knew I lived with the disease. When my MS stuck,…

It was 3 p.m. last Thursday. Things should have been good. I had filed the copy for my previous column the day before. Ultimately, some of my outrageous musings had gone, and some I considered even worse had stayed. It’s an age-old journalism, radio, and TV writer’s trick: If…

I am often so preoccupied with the daily maintenance of MS that I forget where the disease ends and I begin. It is too easy to lose our identity among the myriad challenges that accompany a chronic disease. I am the queen of juggling chaos, but that often leaves…

It’s usually best to write with time for reflection. I often feel like a foreign correspondent reporting from the front line of my own bedroom! The shells of multiple sclerosis (MS) explode within me, and I’m suddenly airlifted into new territory. It’s like being yanked from the street troubles in…

We’re moving and I’m stressed. That’s redundant, I know, as moving is simply stress on wheels — which isn’t good for someone with MS. Studies have shown a link between stressful life events and MS exacerbations, known as flares. Researchers, if you’re reading this, please keep a watch on…

Albert Einstein proved that the faster you go, the less you’ll age compared with those you left at home. This effect, however, is imperceptible unless you have the ability to approach light speed or hang out near the gravity well of a black hole, which is another part of his…

In June, I wrote a column about accepting I’d have to physically retire from directing and producing my own stand-up stage show, “The Edge.” Now, because of that which cannot be named, the show is also being retired just short of its 30-year anniversary! Our very first…

Helicopters were whirling in my brain. Turns out, it was a solitary police one. Though it was another hot night, my wife closed my windows in case of a prowler. I’m on the ground floor, after all. It was a dark moment in my life. Another relapse had struck…

The degree to which people with multiple sclerosis (MS) are conscientious — a personality trait that reflects responsibility, organization, and goal-oriented skills — in their work habits can help to predict their employment status in three years, according to a survey of 70 MS patients. A study based on…

Maybe I should have called this one “Short and Sharp 2.” Yes, I’ve had another relapse, following my last one in May. I can no longer clean my own tail, and the present regime is literally to “s**t the bed!” I’m using a lot of exclamation points here,…

Every few days, I go out to our Little Free Library and change the messages on the two side walls, which are covered in chalkboard paint. One of my missives reads: “My ‘summer body’ plans didn’t work out, but I’m killing my reading list. Take that, 2020!” And it’s…

It all started on the hottest day of the year here in the U.K. My phone said it was 99 F. An old friend was coming over, and my youngest son, Jack, had kindly cleared a route to the garden. So, when she arrived, I took the route. We all…

After you get a new diagnosis and are coming to terms with a new way of life, the next part is especially tricky. You have to tell others. “Urgh. I don’t want to tell anyone! Why do I have to?” I’ve had this conversation with myself more than once.

I am staring at my golden retriever, Abby, as she sleeps on the lawn, the afternoon sun dancing through her fur. Lying so still, she is encapsulated in a golden glow. I glance at her chest and am reassured by its rhythmic rise and fall. Abby is 10, and…

Rose petal confetti — made from the roses my dad had given me a few days before — rained down as the people I cared about most in the world cheered.  “Congratulations!” came from all around as family and friends pulled me in for a hug. My legs,…

Do you ever wake up in the middle of the night thinking strange thoughts about your MS and your dog? I did the other night. I’ve written about Joey, my cocker spaniel, a couple of times. For example, there was a column about the adventure of taking him for…

“Take the time you need,” “This too shall pass,” and “You can’t pour from an empty cup” are just a few idioms I have used to encourage others. Strong shoulders carry heavy loads. My shoulders bear the weight of myself and countless others. The DNA of an empath is…

In this case, the woman in question was yet again my wife, Jane. The hour in question was 4 p.m. on my usual day of writing. But on this day, writing had to be forgotten until a stint later at night (yawn). I had an entertainment Zoom call to partake…

Last Wednesday my days of rest suddenly smashed to a halt. At one point it seemed like the majority of those who work for my local council’s social services (whom I should have also thanked for their immense help over the last few weeks, mea culpa) were squeezed into…

I like my husband. I like his generous heart, his humility, and his penchant for Tommy Bahama shorts, T-shirts, and flip-flops. Sure, I love him. Yet our love has changed throughout our 23-year marriage. We have traded passion for patience and lust for loyalty. While each exists, they are…

Last updated April 25, 2023 In June, the U.K. marks Carers Week, which got me thinking about how a chronic illness diagnosis often affects a patient’s entire family.  Most often, patients are the focus of a diagnosis, and the people around them are almost forgotten. The…

A new digital tool aims to help people with multiple sclerosis (MS) deal with the emotional burden of their diagnosis, guiding them to focus on what matters most in their lives rather than the pain of living with MS. The self-help tool, named ACT MySelf, was developed by…

May 30 was World MS Day 2020, an annual initiative for the MS community worldwide to unite. The Multiple Sclerosis International Federation created this global campaign to educate, raise awareness, and offer hope. Its free, online resources provide an abundance of helpful information. Fittingly, the theme for World MS…

How are you? These three words are ingrained in our vernacular. The question is often asked as a kind gesture, a greeting of sort. Are we truthful in our inquiry, and are we genuinely interested in how someone is faring? The intent of this week’s column is to explain the…

It was 4 a.m. and a crisis was brewing. I knew that this time, I’d be a nincompoop if I tried to deal with the situation myself, as I’d faced spectacular failures recently with the poop bit. I was still groggy from having taken diazepam to deal with my…

“I am fine.” Three words I know as rote. I say them frequently and without hesitation. I utter them as much for others as I do for myself. My reality is too much for most. At times it is too much for me. This packaged response is almost expected. And…

There’s something we need to address, right here, right now. Not all of you will like it or agree with what I’m about to say, and that’s OK. I need to get this off my chest, so here it goes.  I hear so many people with…

The last few months have been interesting for obvious reasons. All of our routines have been toppled over like a stack of blocks, things that were once mundane now feel alien, and getting back to “normal” (whatever that looks like) still feels as far away as the horizon. But I…

This column will be short as I am quite ill. That’s nothing too unusual for those of us with MS. Oh, the joys of a relapse. A while back, it stopped me from walking. Now it’s stopped me from standing! Transferring anywhere is now a nightmare. I have to use…