News, info and tips for living with multiple sclerosis
This is disturbing and, unfortunately, not surprising. More than 50% of people with advanced multiple sclerosis report they’ve been mistreated by a family member or friend who cares for them, according to the results of a survey by researchers at the University of California, Riverside. Much of that mistreatment (44.2%) is described as psychological, often involving being insulted or sworn at in anger. This doesn’t surprise me, because I often…Continue Reading
If you’re having trouble paying for your MS drugs, you’re not alone. I regularly see social media posts from people whose insurance has changed or whose insurance company has suddenly dropped a medication from its formulary (the list of medications it will pay for). Or, it has decided that you must change from a brand name drug to a generic one. Sometimes the problem is that the person with MS…Continue Reading
It’s a good thing my wife, Laura, is persistent. Thanks to her tenacity, we’ve both been able to get our first shots of the Moderna COVID-19 vaccine. According to the pharmacist who gave us our shot #1, in two weeks we should be about 60% protected from the SARS-CoV-2 virus that causes COVID-19. After our second shot, given 28 days after the first, clinical trials report the efficacy jumps to…Continue Reading
My left hand was numb and weak when I was first diagnosed with multiple sclerosis. For years after that, symptoms above my waist seemed just as prevalent as those below it. Yet, there were no tests being used that measured my waist-up disability level — nothing equivalent to the Expanded Disability Severity Scale (EDSS) that neurologists have used for decades to measure the level of disability of people with MS.…Continue Reading
A medical website’s headline screamed, “Breakthrough Multiple Sclerosis Vaccine Shows Impressive Results In Study.” The New York Daily News joined in, highlighting a potential “breakthrough” vaccine. Other media outlets also were using similar adjectives last month. Unfortunately, it’s a little too hype-ish for me. I suspect some of it was was generated because the company sponsoring the research is BioNTech, which helped to develop one of the COVID-19 vaccines. Now, the…Continue Reading
I love the car I drive, but I’ve hated going to the dealer for car service. In the four decades that I’ve lived with MS, my walking has deteriorated to the point where I use a scooter if I have to walk more than 75 feet. If I do walk, I need to use two canes and wear a Bioness L300 Go electric stimulator to counter my foot drop. My…Continue Reading
The advice issued last week by the U.S.-based National Multiple Sclerosis Society about COVID-19 vaccination couldn’t be clearer: “Get your vaccine as soon as it is available to you.” The new MS Society guidelines say that the two COVID-19 vaccines currently available in the U.S., both of which use an mRNA model, are “safe and effective.” The risk of contracting severe COVID-19 far outweighs any potential vaccination risks, they add.…Continue Reading
The answer to whether Amazon, in partnership with a pair of financial giants, can make healthcare more accessible and less expensive for its workers is: Apparently, it can’t. About two years after rolling out a project known as Haven, the plug is being pulled. The idea had been for Amazon to pool resources with the investment and banking firms Berkshire Hathaway and JPMorgan Chase & Co. “to make primary care…Continue Reading
One of the key considerations when choosing a disease-modifying therapy (DMT) is how much it will disrupt your life. It’s one of several factors that need to be evaluated, of course, but it’s important. Unlike shots and pills, infusion treatments can require a significant amount of time. So, will the U.S. Federal Drug Administration’s December approval of a shortened infusion time for Ocrevus (ocrelizumab) be a big deal for people…Continue Reading
Are you sitting down? I am, and I’ve been doing too much of that this year. For the past six months, I haven’t been using our community exercise room. I haven’t been able to swim. I haven’t gone outside that much. I’ve become a couch potato, and you know why: It’s the virus. This is not a good thing. My back has become chronically stiff. Getting out of my car…Continue Reading