It’s 1 p.m. in the U.K., and it’s 90 degrees Fahrenheit. I can hardly move due to the heat. My left hand is typing this. The rest of my body has shut down. Tomorrow is forecast to be the hottest July day in recorded history in the U.K. I had set…
Daily living
OK, this was my first test. Accomplish this and Day One should be a breeze. The trick is not to panic. You’ve crossed a continent with your thumb — now all you have to do is get out of bed on your own. You manage it most days…
Eight Days a Week
It was such a jam-packed week that the flavor was definitely multi-fruit! It included a meet-cute with a barber inspired by Richard Curtis (rom-com writer of “Notting Hill” and others). As no romance — or indeed, bromance — was involved, it was more of a meet-cut. I’ve…
It’s taken over a year to conceive, organize, and plan, but yesterday, I was able to leave the house on my own. I even checked that I had my house keys on me as, in theory, I could now also get in on my own. This is not strictly true:…
Legos, it seems, are more than just a kids’ toy. People with some neurological conditions, including multiple sclerosis (MS), are using those little, colored building blocks to build better lives for themselves. An article in the latest issue of Brain & Life uses Kathleen Jordan as one example. Jordan,…
Nearly Thwarted by a Step
Even in my able-bodied days, I was hardly Channing Tatum — who is? Model, actor, dancer, singer, and he even has the audacity to be funny. There might not be any real comic book heroes in the world, but he is possibly the closest to an X-Man we’ve got.
I’ve used an electric scooter for nearly 20 years. At first, I only used it when I knew I’d be walking a lot. Now, it’s every day. I used a cane for several years before the scooter. I resisted using both, however, and I’ll bet that many of you who…
Kinza Kasher from LeoPlus USA was selected from a list of 10 finalists to receive the $25,000 grant for “Addressing Unmet Needs in MS: An Innovation Challenge,” Lyfebulb and Celgene announced. This initiative’s goal is to encourage the development of innovative solutions to help those…
How Does Your Garden Grow?
A few weeks ago, I told you that I’d made a decision: I had to slow down. I think and talk quickly. I work quickly and drive much too fast for my grandmother’s liking. Basically, everything in my life was fast, and picking up speed with each passing day.
Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “Has anyone tried one of these cooling vests?“ from April 18, 2018. What is…
Living with multiple sclerosis (MS) is an education in and of itself. I’ve learned a lot about myself and I am a different person now, nine years after my diagnosis. I hope to learn and grow over the next nine years as MS continues to shape my perspective on life.
Humpty Dumpty and My MS
I’ve met Humpty Dumpty, and he is me. I made that discovery the other night when I had a bad fall. It wasn’t off a wall; it was just off a chair, but it felt like I’d tumbled off Humpty’s high ledge. It shouldn’t have happened. I’ve lived with MS…
Second in a series. Read part one. I’m actually driving! I really can’t remember the last time I had done so. The car I’d had for years from Motability, a car and scooter program in the U.K. to help the disabled enjoy worry-free motoring (it really works, folks), had…
When I was younger, I assumed that I wouldn’t require a mobility device until much later in my life. I wasn’t prepared for needing to use a cane or a walker in my 50s. My 2010 multiple sclerosis (MS) diagnosis rearranged my life in many ways. And having…
There are two types of people with MS: Those who have bladder problems and those who will have them. That may be an oversimplification but I’d be willing to bet that you, like me, have had that gotta-gotta-go problem too many times to count. Sometimes you make it…
Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “Chair yoga” from April 14, 2018.
Minority Report
In the earlier days of my MS, I could still walk a bit. It was not enough to risk the maze of an airport, so I traveled sensibly in a wheelchair and preregistered as a disabled passenger. My then-teenage son reduced the boredom by placing me facing into suitable…
Need to Know: What Is Gait?
Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “How Do You Manage MS-Related Balance Issues?” from…
Stuck in Delivery Limbo Land
Take a minute … and relax. It’s been a fraught few weeks of numerous solo hospital visits, as my wife was first dealing with a dying father and then helping to organize his funeral, estate, and her own turbulent emotions. Her mum had died only four months ago.
OK, I’ve used a typical tabloid headline to draw you into a column about dealing with lymphedema. Well, the topic is not exactly sexy! Though my calves are now extremely toasty due to being effectively embalmed. Lymphedema has been plaguing me for years now. There seems to be…
I have a hard time asking for help. Even when it’s offered, my knee-jerk reaction is to decline. Only in desperation do I reach out for, or accept, much-needed assistance. I say I am OK more often than I am. I do things myself more than I should.
The Hospital Trilogy
If MS was just about MS, it wouldn’t be easy, but it would be a lot easier. It’s different for all of us. For me, MS means ambulation is practically impossible. I could manage a few yards, but the risk of falling and spending the day as an upside-down beetle…
“Oh no, not again.” My mind races and time slows as I crumble to the floor. Every downward movement is magnified, and so too is the pain of my twisted left foot and leg. They have become the resting place for my slumping body. My fuzzy and confused mind…
I’d be lying if I said I enjoyed the endless hours of Barney I was forced to endure when I babysat kids in the 1990s, but “The Clean Up Song” has stuck with me. Why? For one thing, it worked like a charm to get the house…
Naboso Technology has expanded its product offerings with new insoles and training mats specifically designed to stimulate the nervous system through the skin on the bottom of the feet. The products were developed to help improve balance, posture, movement and restore motor function, as part of a neurorehabilitation strategy…
An international survey of caregivers and adults with neurological diseases, including multiple sclerosis (MS), revealed that spasticity is a hidden burden, having a negative effect on the ability to perform everyday tasks, and that relieving its symptoms significantly improves patients’ quality of life. The survey was presented by…
Do What You Can
One of the hardest things I’ve had to accept with MS is the necessity of asking for help. Pride and self-reliance dissipate remarkably quickly when you find yourself splayed on the floor and you no longer have the capacity to get up. In extremis, I then ask for help.
It’s happened to me, and if you fly with a scooter or a wheelchair, I bet it’s happened to you, too: a busted or missing set of wheels on arrival. On a flight from Washington, D.C., to Venice, my scooter went to Copenhagen. On a flight from…
What a Relief!
New year, new beginnings — not a chance. Theresa May still has Brexit as her waking and sleeping nightmare, and I’m still battling urinary tract infections (UTIs). Over the last few years, I’ve probably written about this more than anything else; it’s the one thing the medical establishment…
I’ve never liked carnival rides (except for roller coasters) because they make me dizzy. Walking sideways, feeling nauseous, and turning green is not my idea of a fun time! So, I go out of my way to avoid anything that can make my head spin. Yet, for some reason,…