community

In the four decades I’ve lived with MS, I’d never before experienced a serious case of vertigo. I’ve occasionally felt a little spacey. In fact, mild dizziness while traveling home from a business convention is one of the things that led to my MS diagnosis in 1980. But vertigo is…

Before turning away, I made sure to compliment my kind eyes. The green of the hazel in my eyes danced in the sunlight. The lines at the outer edges of my eyes tightened as I smiled. The crow’s-feet are an indelible reminder of the abundance of joy in my…

“Sorry, the brakes are terrible!” my husband complained, grabbing the wheelchair’s handles as I slowly started rolling down the hill. He jammed his foot in front of the wheel in a desperate attempt to get the chair to stay in place. We recently got away for the weekend to Blackpool…

In an effort to make sure those with spinal cord injuries and disorders (SCI/D) are included in disability legislation, the United Spinal Association and some 200 advocates recently gathered virtually for this year’s “Roll on Capitol Hill.” The annual event, in which advocates met with lawmakers, gives organization members…

Scientists Discover Enzyme Needed for Activating Myelin Repair Here’s encouraging news for those interested in remyelination — and who isn’t interested in repairing our frayed MS nerves? Yes, it’s only a mouse study, but maybe it’s the starting point for finding a way to use a particular enzyme to…

I don’t know if you’ve noticed, but most people don’t like a problem without a solution. If something isn’t working correctly, they’d rather fix, alter, or throw it out and start all over than live with “wrongness.” Now, that’s great when it involves garage door openers, burnt-out lightbulbs, or shoddy…

Many years ago I thrust myself into the Edinburgh International Festival. For the many who have never heard of it: It’s the largest arts festival in the world, encompassing theater, mime, dance, comedy, film, books, and sometimes even a splash of opera. For some reason I even sat through…

Is 2,500 my magical COVID-19 number? At my annual MS checkup a week ago, my neurologist included a blood test for SARS-CoV-2 antibodies. Antibodies are proteins in the blood that protect the body from being attacked by viruses, bacteria, and the like. In this case, the blood test was searching…

Summertime is synonymous with long days of warmth, coastal sunsets, boating, and barbecues. A montage of my teenage self at sailing camp, pool parties, and beach bonfires plays to Loggins and Messina, Jackson Browne, and the Eagles. The unrequited crushes on sailing instructors to my first kiss … those…

A $1 million gift from Velocity Global will help expand First Descents, an adventure program for young adults living with multiple sclerosis (MS) or other serious chronic conditions. The money will go toward program development and is expected to help First Descents reach 1,000 MS patients over…

Something crazy happened: I felt the strength slowly run out of my leg. It was like it needed a serious charge, but the charging port was nonexistent. I’d received some bad news a few days before that, and I think the stress of the news caused a flare-up. My…

Stem Cell Transplant Trial Enrolls First Patient in Minnesota It looks as if we’re moving closer to the day when stem cell transplants become an approved MS treatment in the U.S., at least I hope so. A trial is enrolling subjects to test the stem cells against several…

There was a time when I’d regularly strap on two pads, stride out between English showers, and attempt to bat on the subsequently dodgy surface. That was good for the fast bowlers, except they now found themselves also slipping on the sopping grass. I sympathized with them, as I was…

Happy anniversary to us! My wife, Laura, and I are celebrating our 45th wedding anniversary this month. It’s hard to believe, especially because the divorce rate for someone with multiple sclerosis is higher than it is for a healthy couple. A review of records in the Danish MS-Registry a…

Has anyone ever told you to be thankful that things aren’t worse after you’ve received upsetting news? Have you ever felt pressured by others to be grateful, even in the most difficult circumstances? It’s happened to me more times than I can remember. I now understand…

Three weeks into the Overcoming MS (OMS) diet, I’m pleased to have made the switch. The diet focuses on eating fish and seafood, and lots of fruits, vegetables, and whole grains, it excludes dairy, and has minimal saturated fats. I’ve seen a difference…

Nasal Foralumab Led to Promising Immune Effects in Phase 1 Trial It sure would be nice to have a nasal spray to treat MS, but this research is still in its early stages. This study looked only at the safety and preliminary effectiveness of nasal foralumab on healthy volunteers.

If you have multiple sclerosis, no matter how long you’ve lived with it, you likely know it can be unpredictable. It can hit in weird ways you’re not expecting, even after years of learning how to deal with it. For instance, last Saturday, my family of four and some friends…

Screaming. The pain from this trigeminal neuralgia (TN) attack was worse than any previous attack. And there have been aplenty. I couldn’t function! But boy could I scream. It was 8 a.m. and I was stirring awake. My tongue merely touched one of the bottom molars on the…

Paging Dr. Google. OK, maybe I’m being overly dramatic, but The Wall Street Journal recently reported that Google and HCA Healthcare have struck a deal to share data and create healthcare algorithms. HCA plans to use the data system to improve operating efficiency, monitor patients, and even guide some decisions…

Belong.Life, a developer of a networking platforms that help patients navigate and manage their disease, has added a French language option in its BelongMS app for the French-speaking Canadian community. BelongMS is a free mobile app that uses artificial intelligence algorithms to support the multiple sclerosis (MS)…

Doctors recently told me that the medication I’ve been taking for the last seven years for MS hasn’t been working. This is news that no one wants to hear.  When I first started Tecfidera (dimethyl fumarate), an oral tablet, I was…

Due to the ongoing COVID-19-associated restrictions, the National Multiple Sclerosis Society is inviting supporters of its Walk MS events to connect, celebrate, and fundraise for the fight against multiple sclerosis (MS) through a virtual platform. “The National MS Society creates Walk MS celebrations in every state so participants can…

Well, this was a first. I’d fallen backward once in my power wheelchair. That was in the back of our mobility van. Hubris told me I could get away with just holding on to the handgrip for a few hundred meters. As ever, hubris was wrong! About six months…

“Why aren’t researchers doing more to find a cure for multiple sclerosis?” “Why isn’t more effort and money devoted to this?” I regularly read comments like these after I write a column about a new disease-modifying therapy (DMT) that’s either being tested or has just been approved. Some, like Multiple…

World MS Day, created by the MS International Federation and its members in 2009 to bring together the multiple sclerosis (MS) community, will this year continue online its 2020–2022 theme of improving connections to break down social barriers. The global MS campaign, featuring…

The other night I was watching the “Pirates of the Caribbean” series, my favorite film box set, and it occurred to me how similar life with multiple sclerosis feels to life on a pirate ship. A particular scene sparked this…

NICE Again Says No to Adding Zeposia to Health System for England and Wales Reading this news, I’m again reminded of the major difference between the healthcare system in the U.S. and those in most of the rest of the world. While the systems outside the U.S. provide most…

One of my favorite moments in Arthur Miller’s “Death of a Salesman” involves a stolen fountain pen. If you’ve not read — or better yet, seen — the play, I can’t recommend it enough. It’s a story about making it big in business and losing yourself in the process.

For any younger readers, and by that I’m guessing 45 and under, may I present the cartoon character Popeye the Sailor Man. He got himself out of scrapes by downing a can of spinach, which supercharged his muscles. There was none of that nonsense of de-stalking raw young leaves…