Columns

I’ve been tired all day, which is nothing new, as fatigue and multiple sclerosis go hand in hand. It’s been one of my primary symptoms since I was diagnosed in 1980. To counter it, I’ve taken Provigil (modafinil) for many years. Initially, taking 100 mg in the morning helped…

The holiday season has always been a time of reflection. The year passes by in a montage of memories. I am reminded of the past 11 months. The highs and the lows. My hopes and my aspirations. Those lives that have been lost and those that have just begun.

“I’m too hot!” My brain was turning to mush as my body seemed to grow heavier. I could feel the energy draining out of me. This isn’t an uncommon complaint when the weather grows hotter during the summer. Most people…

Tysabri Affects Immune System Beyond Known MS Target, Study Finds Tysabri (natalizumab) slows multiple sclerosis progression by blocking some immune cells from entering the central nervous system, where they attack the myelin coating of nerves. Yet this study shows that Tysabri may also significantly reduce the number of proteins…

A pet is the most loyal companion a person can have.  I’m currently sitting in my dad’s home office and typing away on my laptop. It’s nice to have a change of scenery. I brought my tiny dog, Lucy, with me as usual.

Smartphone Typing Patterns May Be Tool for Monitoring MS Progression, Study Finds This is an interesting concept that makes sense. Like the nine-hole peg test that some neurologists use to test finger dexterity, and like some apps that attempt to measure this, monitoring how quickly, and in what manner…

Well, friends, we are coming to the end of 2020. Thanksgiving is next week, and believe it or not, Christmas is just around the corner. And while I can’t say I’m grateful for all the challenges this very weird and wacky year has presented me with, I remain so for…

My travails with MS invariably deal with what it does to me. This week, dear reader, it’s what I did to my jolly old self! I’ve got a daily light exercise routine designed for me by an occupational therapist (OT) and a physiotherapist. Why two professionals? Well, the…

The temperature’s dropping. The wind is whipping. It’s time for my wife, Laura, and me to head south, leaving cold, uncomfortable Maryland for the welcoming warmth of southwest Florida. Or is it? Though I once swore I’d never become a snowbird, a few years ago, we spent a week on…

The end of the year is incredibly difficult. We already have to put up with more than others because of our MS.  In addition to that, the weather changes, the clocks turn back, and there is less sunlight, meaning vitamin…

Neurofilament Light Levels at First MS Event Can Predict Long-term Brain Atrophy Researchers are looking at a protein that’s released into the body’s fluids when neurons become damaged. They hope it will help them predict — as far as 10 years down the road from the first indication of…

The other day, I was watching an arts documentary instead of another repeat of a movie from the Marvel Cinematic Universe. It was about John Steinbeck’s “The Grapes of Wrath,” of which I’m a fan. The headline for a column I’d been mulling for some time about MS mouse research…

The Multiple Sclerosis International Federation (MSIF) has issued new recommendations about how people with MS should adjust their daily lives because of the coronavirus pandemic. The MSIF, a network of national MS societies from around the world, first issued COVID-19 recommendations last spring. But much has been learned…

Overachieving is my jam. Go big or go home. I strive to be the best at whatever it is I do. Currently, I am achieving greatness in my ability to fall. Three falls in three weeks is a new record. The first one happened in the kitchen. Upon feeling myself…

Annually, I’m frustrated by the changing of our clocks due to the end of daylight saving time. It seems so straightforward: Time either goes backward or forward by an hour. That’s it. It doesn’t seem so challenging to comprehend. Or does it?…

Phase 3 Trial of Sativex, Cannabis Extract Treatment for MS Spasticity, Opens in US This is a major step toward making a clinically tested, cannabis-based medication available in the U.S. I’ve always thought that medications containing a THC/CBD combination are useful to lessen some MS symptoms, but the lack…

Well, folks, we made it to the end of a very long political season and an even longer week. I don’t know about you, but I don’t feel a bit relieved. In fact, I have tension and stress trapped in every muscle and joint of my body. And that’s not…

I have two regular carers at the moment. The first to arrive greets me with her usual efficacious, “Good morning, John!” She’s loud enough to wake the whole street. Luckily, my neighbors should be up anyway, as my carers are booked for 11 a.m. each weekday. I have mentioned in…

Did you know that there are various types of fatigue, and each makes us feel slightly different than the others? A long while ago, I was at an MS seminar listening to a nurse talk about fatigue. She…

MD1003 Fails to Prevent Disability Progression in Progressive MS Patients, Trial Shows This is discouraging news for people taking high-dose biotin, many who have been buying it over the counter. Not only do these researchers report that taking 100 mg of biotin (MD1003) three times a day failed to…

Last week’s column, “The Loneliness of the Long-distance UTI Patient,” dealt with my dive into the Eastern (bloc) world of bacteriophages. It would be a fun exercise (and boy, do I need some exercise) to dive into the history of the discovery of bacteriophages and antibiotics. Both fight…

Is the United States a step closer to approving a form of stem cell transplantation as a treatment for multiple sclerosis? I believe it may be. That’s because the National Multiple Sclerosis Society (NMSS) has slightly changed its view of autologous hematopoietic stem cell transplantation, or aHSCT. aHSCT involves…

I have been living in the land of Netflix. It went from a place I would visit from time to time to a home away from home. In between life’s moments, I find myself teleported to the land of escape. I become lost amid the complexity of characters and the…

It doesn’t take much for us to feel uncertain. It could be the result of a new symptom or doing something you’ve never before done, such as attending a telehealth appointment. Maybe the election causes you uncertainty. Perhaps current events or new…

Majority of MS Patients in US Report Mistreatment by Caregivers in Survey This is a serious issue, but it’s not as pervasive as this headline makes it appear. The survey looked only at the treatment of people with advanced MS, the 30% of people with MS who need help…

A few weeks back, I listened to a segment on NPR’s “Here & Now” featuring superstar pianist Lang Lang and his latest recording project. I’m still thinking about it. He decided to tackle Johann Sebastian Bach’s masterwork, “Goldberg Variations.” No mean feat, seeing as how there are 30 variations…

When did I first become aware of the word “phage”? “Star Trek,” of course! It was an episode about a disease that was destroying a race somewhere in the Delta Quadrant. (OK, possibly — even I fade out in the Nerdverse. But it definitely was in the “Voyager” series.)…

Editor’s note: Previously, this piece stated that Dr. Ide Smets theorized a transition to telemedicine as the standard of care could cause decreased life expectancy in the U.K. of up to 30 years. The piece has been corrected to state that such a change could result in a decreased life…

The cog fog (cognitive fog) is thick and heavy. I cannot seem to extract words from the alphabet soup that fills my head. This is torturous for a self-described word nerd. And as my MS progresses, so does the fog. Slowed cognition has become one of the most…

Finding an understanding community makes such a difference to people diagnosed with multiple sclerosis (MS).  Our partners, families, children, and friends do their best to listen and empathize, but at the end of the day, they can only empathize so much. Unless they have an illness…