News, info and tips for living with multiple sclerosis
I’ve done quite a bit of flying, for business and pleasure, over the 42 years I’ve lived with multiple sclerosis. It’s not easy traveling by air with my electric scooter, and I can’t imagine trying to fly with a 450-pound power wheelchair. Actually, I don’t have to imagine. I have some friends who use power chairs and they’ve shared some stories. Michael Morale tells me that, on a trip to…Continue Reading
I’m just back from walking our dog. My wife, Laura, rescued him about a year ago. When she learned , his name is Toby, like Tobias, she thought it was a sign that he was the dog for us. We’ve had dogs before, but neither us is getting any younger or healthier. I wondered, could we handle another pet? Toby is very cute, but he’s very stubborn. When you walk…Continue Reading
Memorial Day, the unofficial start of summer vacation in the U.S., is fast approaching. It’s almost time for some summer beach fun — if we can get there. Beaches can be difficult, if not impossible, to access for many people with multiple sclerosis. But times seem to be slowly changing. A disability-friendly beach house Last summer, my friend Sara Loud, the CEO of the nonprofit Accelerated Cure Project for MS…Continue Reading
A recent post on the MS-Selfie blog asks and answers this question: What is the “greatest unmet need” concerning multiple sclerosis? Professor Gavin Giovannoni, the London-based neurologist who writes that blog, lists five unmet needs, many of which I agree with. But those needs are from the viewpoint of someone who treats MS. Here are some thoughts from someone who has lived with MS for nearly 43 years. These are…Continue Reading
Is artificial intelligence (AI) intelligent enough to help with a multiple sclerosis (MS) diagnosis? Apparently so, and more. In the U.K. a project named AssistMS is studying whether AI can be used to detect and highlight changes on brain MRIs. An algorithm called icobain ms is said to be able to to detect lesions in the brain, measure brain volume, and report on how each changes over time. “Neurologists will…Continue Reading
Oops! I took a turn too fast in the parking lot of my condo the other morning and tipped to the left. And with that, my mobility scooter and I headed for a fall. Do you know the feeling when something bad is about to happen and there’s nothing you can do to stop it? I had that feeling. Five seconds seemed like 50 as the 325-pound scooter began to…Continue Reading
Biogen has been a top dog in the multiple sclerosis treatment field for decades. The pharmaceutical giant developed Avonex (interferon beta-1a), approved in the U.S. in 1996 as one of the first disease-modifying therapies (DMTs) for MS. I remember how excited I was to be participating in its Phase 3 clinical trial. “Finally, there’s a medication that might stop my MS,” I thought. MS medications, such as Avonex, have long…Continue Reading
Many people with multiple sclerosis have experienced a urinary tract infection (UTI) at some point. It’s a common problem with MS and can be caused by a number of things, such as the inability to fully empty the bladder or the need to self-catheterize. Symptoms can include urinary frequency and urgency, a burning pain while urinating, abdominal pain, and foul-smelling urine that looks milky or cloudy. Urinary tract infections can…Continue Reading
Is treating multiple sclerosis only about being treated with a medication? At least one neurologist thinks so, and probably more. The other day, posting in an MS Facebook group, a woman named Debbie wrote about her first visit with a new neurologist: “He asked if I was on a DMD [disease-modifying therapy] and I told him not anymore. I’ve had bad experiences. He told me that he wouldn’t treat me…Continue Reading
Have you ever heard of an ABLE savings account? I hadn’t until a couple weeks ago. The acronym stands for the Achieving a Better Life Experience Act, a law passed by the U.S. Congress in 2014. It created special savings accounts that allow disabled Americans, including people with multiple sclerosis, to save money without jeopardizing their public benefits such as Medicare, Supplemental Security Income (SSI), and food stamps. People in…Continue Reading