News, info and tips for living with multiple sclerosis
OLYMPUS DIGITAL CAMERA
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
Many of us have received help to pay for our MS medications. Now it’s possible that patient assistance programs, including copay help, could be threatened. A recent article in the The Wall Street Journal reports that U.S. government prosecutors are looking into whether some pharmaceutical companies’ patient assistance programs are on the wrong side of the law. These include direct copay assistance, donations to foundations that help patients pay for…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
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 exercise equipment to monitor my gym progress. A brand new version of the Apple Watch (the Series 4) came out just…Continue Reading
Does your illness limit your ability to find a date? (Courtesy of Lemonayde) Dating isn’t a concern of mine, since I turned 70 earlier this month and have been happily married for 42 years. But, on the MS social media sites that I follow, younger, single folks regularly post concerns about starting relationships. Now there’s a dating app that might help make that social connection easier. It’s called Lemonayde. The dating…Continue Reading
I’ve been using a mobility scooter for about 15 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 countries) and I even use it to walk the dog.. I have two scooters. One is lightweight at 35 pounds and can…Continue Reading
The neurologist who treats my MS is a woman. So is my primary care physician. I wouldn’t have it any other way, and an article in The New York Times makes me feel my decision is the right one. Patient studies tell the tale The Times article points to a recent study of more than half a million patients admitted to emergency rooms for heart problems over a two-decade period…Continue Reading
I’ve recently come across two short movies that are designed to show what it’s like living with MS. But they have two very different approaches. The National Multiple Sclerosis Society in the U.S produced one of the movies. It runs about 3 minutes, features several people who live with our disease, and appears to be designed as a fundraising tool for the society. The other film was produced by a…Continue Reading