News, info and tips for living with multiple sclerosis
Can you use your mind to attack your MS, just as you use things such as medications and physical therapy? Some people who believe in the benefits of mindfulness think you can, at least to some extent. Mindfulness is defined as “the basic human ability to be fully present, aware of where we are and what we’re doing, and not overly reactive or overwhelmed by what’s going on around us,”…Continue Reading
When my wife and I were remodeling our two-story home many years ago, we made a few accessibility changes with my MS in mind. For example, we enlarged a first-floor half-bath to include a roll-in, accessible shower. We also installed a higher toilet and made sure there was space to fit a wheelchair next to it. If it became necessary, I could turn our first-floor den into my bedroom. It…Continue Reading
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 Baltimore to St. Kitts, I was happy to see my scooter appear at the cabin door. But where was the back of its…Continue Reading
Patients want to be more involved in their healthcare, but it’s not an easy process. I’ve written before about the hurdles we have to overcome to get some healthcare providers to communicate with us, to listen to what we have to say about our medical problems, and even to return our phone calls. The problems extend from the top down to the receptionist and other non-medical office staff. A group…Continue Reading
Over the past few of weeks, warnings have been issued about side effects of two MS treatments. First, the U.S. Food and Drug Administration warned about a “slight” risk of seriously worsening MS symptoms if someone who is using the disease-modifying therapy Gilenya (fingolimod) stops using it. The FDA’s alert said the worsening symptoms could “result in permanent disability,” but the alert failed to provide details about how rare these…Continue Reading
We’ve all been there. That “uh-oh” feeling hits and you know you’ll be in trouble if you can’t find a public bathroom, fast. You hope the clerk in the store with the “Bathrooms for Customers Only” sign will make an exception if you tell her it’s about to run down your leg. There’s got to be a better way than that. And maybe there is. (Screenshot from the “Just Can’t…Continue Reading
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I’m too tired to write tonight. I wrote that several weeks ago after my wife had back surgery. I’d been doing a couple of things that I haven’t done much in the 42 years since our wedding: shopping and cooking. (Well, making Harris Teeter ready-to-heat meals, that is. For me, that’s cooking. So, I was too tired to write that night. On top of this, I’d been wrestling all day…Continue Reading
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 a disability 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, and bulkhead seats are hard to nab. If you’re traveling with a scooter or a wheelchair, you look out the…Continue Reading
Is getting from home to the doctor 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 you live? It’s such a hassle that as many as 30 percent of patients may be skipping their medical appointments due to…Continue Reading
Ocrevus (ocrelizumab) is a serious disease-modifying therapy. It has the potential to deliver a major blow to a patient’s multiple sclerosis, but it also carries the possibility of severe side effects. The protocol for Ocrevus requires different doses on different infusion dates, following a specific treatment schedule. It’s also very expensive. This all shouts for the need for serious care coordination! Jamie’s care coordination problems I was concerned when Jamie, who…Continue Reading