News, info and tips for living with multiple sclerosis
Over the past few months, I’ve written a couple of times about actress Selma Blair and the very public way in which she’s been handling her MS diagnosis. When Blair went public with her MS last October she did it on Instagram, writing, “I am disabled. I fall sometimes. I drop things. My memory is foggy. And my left side is asking for directions from a broken gps. But we…Continue Reading
A former colleague recently asked me, “How are you doing in your battle with MS?” It was a legitimate question, not one of those throwaway lines of mock concern that we often hear. We were discussing the death of a former colleague who had been diagnosed with MS in 1996. She was just 59 years old when she left us earlier this month.” Annie’s death and the “how are you…Continue Reading
I see a lot of reasons why people stop, or refuse to start, an MS medication. “Thinking of stopping the…meds. Sick of the shots and how they hurt to take them” “I stopped all of them….all multiple times. It takes too long for an appointment and I tapered off “ “Half the s**t will kill you” “My body and my choice” “The side effects are worse than the disease” Forty…Continue Reading
How quickly to start a disease-modifying therapy after an MS diagnosis is a question that I frequently see when browsing online. It goes hand in hand with which DMT is best to start with. There are many things to consider when making that decision. Here’s a study that may help you weigh the benefits and risks hitting your MS hard and fast. Any DMT is better than none The study,…Continue Reading
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
There are more than a dozen disease-modifying therapies available for treating MS. Some are shots, some are infusions, and some are pills. Some are more effective than others. The marketing intelligence company Spherix Global Insights regularly surveys which of these treatments are being used by neurologists and what’s influencing their selection. Here’s what the latest Spherix quarterly survey shows about what’s being prescribed. Just over half of the 100 neurologists…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