News, info and tips for living with multiple sclerosis
My cane mutinied. I’ve been using canes for about 20 years — first one, and then a pair. I’m tough on them and put a lot of weight on them. I take them out in the heat, cold, and rain. I force them to rest on the scorching cement when I go for a swim. It’s not easy being one of my canes, so it’s no wonder that, a few…Continue Reading
It may sound like a joke or a scam, but there’s a nonprofit organization called RIP Medical Debt that might pay off your medical debt. Yep, all of it. According to the organization’s website, RIP Medical Debt has paid off more than $6.7 billion of other people’s medical bills over the past eight years. Healthcare costs take a big chunk out of people’s budgets. That’s particularly true for people being…Continue Reading
The National Institutes of Health (NIH) is joining the search for a vaccine to attack the Epstein-Barr virus (EBV). This is a big deal for people with multiple sclerosis, because carrying the virus is thought to play a significant role in the development of MS. In fact, research published earlier this year by Harvard scientists concludes that a previous EBV infection may increase a person’s MS risk by 32 times.…Continue Reading
What was the first of the MS symptoms you noticed? I’m asking this because of a new podcast that a friend is producing…but more about that later. My first symptom — the one that made me realize something was really wrong — was my inability to squeeze the toothpaste tube with my left hand one morning. Of course, there were earlier hints of trouble. I was unusually tired while attending…Continue Reading
It’s not easy going for a cruise when a scooter and a couple of canes come along for the trip. I’ve done it with success a number of times in the past, and planning helps a lot. My wife and I recently returned from our first first cruise since the pandemic began. It was also the first cruise for us with our son and his family. Much was the same…Continue Reading
I always knew that living with multiple sclerosis (MS) was super-expensive, but a new study is a real eye-opener. The study, published in the journal Neurology, puts the annual tab for MS in the U.S. at $85.4 billion in 2019. Most of that amount, $63.3 billion, comes from direct medical costs — things like disease-modifying therapy (DMT) infusions at clinics ($6.7 billion), outpatient care ($5.5 billion), and prescription medications ($37.9…Continue Reading
Do you think about death? I do — a lot. I mean, like almost every day. Don’t get me wrong. I’m not suicidal, and I’m trying not to sound morbid. I love my family, my friends, and my life. I’m not depressed. But I do think about what’s down that road around the next bend. Usually it’s just a brief “I wonder when?” moment. But sometimes it’s, “Will I leave…Continue Reading
I’m marking a big anniversary this month. It’s been four years since I finished the second round of treatment with Lemtrada (alemtuzumab), my final disease-modifying therapy (DMT). That means that, after about 60 monthly blood draws, I’m finished being stuck. Lemtrada is usually a two-phase series of injections, with each phase separated by a year. The medication wipes out most of the cells in an MS patient’s immune system with…Continue Reading
April 1 is a day when those of us in the journalism profession always had to be on special guard against pranksters who would try to trick us into reporting phony April Fools’ Day news items. So, I need to be very clear about this post about Dr. Glaucomflecken. “Dr. G” doesn’t exist. He’s an invention of Dr. Will Flanary, a 36-year-old ophthalmologist in the Portland, Oregon, area. “Dr. F,”…Continue Reading
You might be wondering why a Yank like me is writing about multiple sclerosis care in the United Kingdom. It’s because a survey caught my eye the other day that I think deserves a closer look. The survey, conducted by the MS Trust alerts us to what could be a serious problem for people with MS in the U.K.: Caseloads for nurses who specialize in MS care rose significantly from…Continue Reading