News, info and tips for living with multiple sclerosis
Travel with my multiple sclerosis can mean super-size stress. But some advance planning can smooth the ride. I’ve always taken pride in my ability to travel the world using my little scooter, but this trip – flying from Florida to Washington, DC and back over the Christmas holidays – worried me. My wife and I hadn’t flown in five or six years and, since our last flight, Laura had begun…Continue Reading
As some of you may know, after more than seven years of writing the MS Wire column for MS News Today I am no longer writing for that website. As I admitted in my final column last Friday, “writing a couple of columns almost every week, under a deadline, has taken its toll on my energy, and sometimes on my mood. It’s time to back off a bit.” Much of…Continue Reading
It wasn’t a good morning. I was dragging my cement-pillar legs around the kitchen and grew frustrated as I lurched from the refrigerator to the counter to feed the cat and the dog. I’d propped my two canes against the counter, but they’d slid to the floor — not once, but twice. When I bent down to put a bowl of water on the floor, it spilled. Then I wanted…Continue Reading
I slept through the night last night. Recently, I’ve managed to do that on most nights. No 4 a.m. bathroom trips for me! That’s a big deal. There was a time when I’d get up two or even three times during the night for a bladder run. Sleeping seven or eight hours straight is huge. I’ve been troubled by bladder frequency and urgency for many years during the four decades…Continue Reading
I’m back in my happy place. My wife, Laura, and I, along with our Yorkie-poo and our Maine Coon cat, have made it back to our Florida home after 16 hours and about 1,000 miles of driving over two days. There were no traffic jams, we had a comfortable motel bed, my multiple sclerosis bladder problems were pretty much under control, and Laura and I didn’t kill each other. So…Continue Reading
“I’m so tiredThe hammer’s coming down againI’m hardwiredAll the signals cross and double backBroken insideThere’s no fixing anythingHow do i explainI’m fighting every day to do the simple things?” The lyrics to “Hammer,” written by Susie Ulrey of the band Pohgoh, probably ring true for most everyone with multiple sclerosis. Ulrey’s story is similar to many of ours. Double-vision three days before her wedding in 2000. A visit to a…Continue Reading
My mobility scooter quit on me the other day. I can walk 100 feet or so using a pair of canes, but my wheels are usually my legs. So when I turned the key and discovered those “legs” were powerless, I was stuck. This breakdown couldn’t have happened at a worse time. My wife, Laura, had been prepping for a medical procedure, the one where the prep is worse than…Continue Reading
You’d think that people with multiple sclerosis or another disability would have easy access to healthcare services. That’s not always so. A small study in the journal Health Affairs that I wrote about last year said many physicians “expressed explicit bias toward people with disabilities and described strategies for discharging them from their practices.” Now, at the urging of people with disabilities and others, the U.S. National Institutes of Health has…Continue Reading
My wife and I got the latest COVID-19 vaccine the other day, the first of three vaccines we’ll be getting this fall. The others are the seasonal flu vaccine and the respiratory syncytial virus (RSV) vaccine. This was my sixth COVID-19 vaccination, and I’ve received a flu shot every year for decades. They’ve never been a problem for my multiple sclerosis. The RSV vaccine has only recently been approved by…Continue Reading
A question that’s been bothering me lately is this: It seems that more than a few neurologists have a less than optimal understanding of multiple sclerosis. Why is that? In my four decades of living with MS, and during the several years I’ve written about my illness, I’ve regularly heard complaints from people with MS that the neurologist they’re seeing just doesn’t seem to have the right stuff. A Reddit…Continue Reading