Daily living

We’ve all been there. That “uh-oh” feeling hits and you know you’ll be in trouble if you can’t find a restroom, fast. You hope the clerk in the store with the “Restrooms for Customers Only” sign will make an exception if you tell her it’s about to run down…

A tragic car crash involving a man with MS is a reminder that we all should be just a little bit more careful than the average driver when we get behind the wheel. The accident happened in early October on a street in Eugene, Oregon. As reported by…

“You’ve had a haircut — very smart!” was the greeting at work. Yes, but it was in no way a simple thing. The logistics involved were really that: It took the small army of my family to complete the mission. Until my last relapse six months ago, I could…

Each morning, I’m confronted by an adaptation of the conundrum faced by Forest Gump’s mother: “Life [is] like a box of chocolates: You never know what you’re gonna get.” If I can’t get myself out of bed, it’s going to be a bad one. I may be in…

Flying isn’t what it used to be, as everyone who’s taken a flight in the past 15 years or so knows. Flyers with disabilities can have a particularly challenging time dealing with airports, airlines, and aircraft. Airports are crowded and stretch forever. Airplanes are crowded, their seats are small,…

Going to bed late and sleeping is reportedly a marker of intelligence. In that case, I am definitely something of a genius. So, it’s always a shock when I have to get up in the morning. I’ve spent a lifetime avoiding it! I’ve lived in such a form…

Growing up, my parents taught me the value of hard work. No matter what I was doing – playing sports, volunteering, or starting my first job – they always encouraged me to give it my all, but even more so, they led by example. Their work ethic was unparalleled and…

Sorry, this story is definitely parochial and about being disabled, rather than narrowly focused on having MS. It also turns out to be somewhat celebratory — albeit starting from a criticism. Before I get to that, a bit of history. The black cab is an international symbol for London like…

Is getting from home to a healthcare appointment a pain in the butt for you? Do you have to search for someone to take you? Do you haul yourself into your car and hope that you can find a nearby parking spot? Is public transportation impossible to find where…

Everything can be more challenging when you have a disability, and being part of the workforce can add even more challenges. The month of October is National Disability Employment Awareness Month (NDEAM), and according to the U.S. Department of Labor’s website, this year’s theme is “America’s Workforce: Empowering All.”…

Dental hygiene is not a high priority for some people. Brushing, flossing, dental checkups, and cleanings are often overlooked or avoided. For those with a disability, keeping up with a dental care routine can be incredibly challenging. While the energy expended to ensure proper dental care can increase fatigue,…

Last Wednesday morning didn’t go according to plan. I’m lackluster every Wednesday morn because Tuesday nights are my regular work gig at London’s Comedy Store. I laugh too much, drink too much, and don’t get home till about 11:30 p.m. Still, I had a good sleep. My new…

I never thought I’d want a wearable internet device until I got an Apple Watch for my birthday. One of its neat apps tracks the laps that I swim, the steps that I (try to) take, and my pulse rate. The watch can even link up with some high-tech…

Third in a series. Read parts one and two. In March 2018, I began a personal research project — quest if you will — to assess how functional electrical stimulation (FES) devices might help me deal with the foot drop in my…

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…

I’ve been using a mobility scooter for about 10 years. I use it anytime I need to walk more than about half a city block. I throw it in the back of my SUV, I’ve taken it on planes and cruise ships (I’ve ridden it in 15 or 16…

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…

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…

Well, this is going to be a niche market: A picture of a toilet should grab the attention of any plumber who’s now got MS and reads Multiple Sclerosis News Today. Victories need to be celebrated no matter how small the Venn diagram is! The toilet looks OK.

Leaving a restaurant the other evening, I was stepping off an unusually high curb. Right cane down, left cane down, swing the right leg, swing the left leg, and … uh-oh. Down I go. I’d been asking for it. I’d needed to change the electrodes on the Bioness…

In mid-July, the woman who writes the Multiple ExperienceS blog had a little fall. As Jamie explains, her rollator went forward, but her feet didn’t. The fall left a small cut on her knee. Over the next few days, Jamie’s knee swelled, and a trip to her doctor,…

The Multiple Sclerosis Association of America (MSAA) recently launched a new version of the My MS Manager, a mobile app designed to provide convenient services to the multiple sclerosis (MS) community. The app is powered by @Point of Care and is available as a free download…

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…

The benefits of drinking water (H2o) are many — and not only in the summer months. If you have multiple sclerosis (MS) drinking an adequate amount of water is essential. I know what you are thinking: “More water intake, equals more trips to the bathroom.” That is what used…

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…

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…

More investment and new technological developments are needed to assist people who have limited mobility because of lower-limb paralysis. That was the major conclusion of an international study undertaken by ComRes on behalf of the Toyota Mobility Foundation. Around the world, millions of people have lower-limb paralysis. In…

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…

If you read my last column, you’re well aware that there has been some drama around Casa de Hughes over the last few weeks. I can now happily say that the situation has been resolved and we’re trying to get things back to a more normal, humane pace.