community

You get used to … Hold on there, matey boy. Be honest and write “I.” This column has a reputation for brutal honesty (I’m sure someone has referred to it that way over the past five years), so don’t get all coy now that you’re not the center of medical…

What do you do to make living with multiple sclerosis (MS) easier? A similar question was posed to readers of the MS News Today Facebook page recently, and about 175 people responded. Even an MS old-timer like me (I’ve been living with the disease for 42 years and…

Well, I survived! I would’ve never believed something so seemingly insignificant could cause such devastating and lasting effects on my health. I’ve had urinary tract infections (UTIs) before, as they’re a complication of self-catheterization with multiple sclerosis (MS). But this was the mother of all UTIs. It started…

In one of my favorite scenes of the 1970s movie “The Goodbye Girl,” Paula McFadden (played by Marsha Mason) begs Elliot Garfield (played by Richard Dreyfuss) to quit playing the guitar late at night when he can’t sleep. “Have you ever tried pills?” she asks, to which he…

Welcome to “MS News Notes,” where I comment on multiple sclerosis (MS) news stories that caught my eye last week. The articles in today’s column came from the annual Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS), held Oct. 26–28 in Amsterdam. Most…

The call from my urologist’s office came far later than I was expecting, in regards to my long-term chronic urinary tract infection (UTI). The call came in on my home phone, but luckily, someone else was around to answer it. I long ago gave up trying to answer that…

I’ve been feeling like a soccer mom the past month or so, even though I’m a 74-year-old guy. My wife and I are leasing a minivan, the go-to wheels of after-school sports parents. It also seems to be a great vehicle for someone with a disability like multiple sclerosis…

Multiple sclerosis (MS) and a good night’s sleep seem to be mutually exclusive. I seriously doubt that anyone with MS will reply in the comments that the disease has blessed them with the best sleep of their lives. Yet I used the word “seem” because when writing about any…

Ten years ago, my husband and I lost our twin girls during my 18th week of pregnancy. In some ways, it feels as though this decade has flown by in the blink of an eye, but in others, it feels as though an eternity has passed. Several years before I…

Here are a few multiple sclerosis (MS) stories that caught my eye last week. Two of them came out of this year’s Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS). Ocrevus treatment More than 250,000 people with MS have been treated with the…

Ah, one of the classic setups for a Christmas cracker joke. Others include, “Why did the chicken cross the road?” and “How many ____ does it take to change a lightbulb?” While these gags are popular in Britain, I’m not sure if they exist in the rest of the English-speaking…

“I Am Not The Doctor For You” is the title of a shocking new study published earlier this month in the journal Health Affairs. It reports that a number of doctors acknowledged being uncomfortable with treating people with a disability. The study was conceived of by Lisa Iezzoni,…

Here are a few multiple sclerosis (MS) stories that caught my eye last week: Can nabiximols ease MS spasticity? In “4 Weeks of Nabiximols Found to Ease Spasticity in MS Pilot Study,” Margarida Maia reports some potentially good news for people with MS spasticity. Nabiximols, marketed in…

“You married a husband and ended up with a child,” quipped I. It was first thing Sunday morning, and I was addressing my wife of 30 years, Jane. She stood with blue, latex, hypoallergenic gloves on her hands, ready to deal with my sopping wet pad. More on that…

It’s the time of the season. Every year around this time, I get a seasonal flu shot. I’ve been doing this for as long as I can remember, certainly all of my adult life. But this year is a little different. There are now three flu vaccines preferentially recommended…

A golfing fundraiser held by Sordoni Construction pulled in $40,000 to support comprehensive wellness programs for multiple sclerosis (MS) patients at the Linda E. Cardinale Multiple Sclerosis Center in New Jersey. The funds were raised in September during the 2022 Sordoni Construction Golf Classic. Some 128 golfers, as…

Something is happening to me. All four limbs have become heavier than usual over the past two weeks. My arms and fingers are stiffer and less responsive, and I’ve somehow managed to effect a shuffling gait in my wheelchair. My eyes tire quickly, to the point it seems like I’m…

Note: This column has been updated Oct. 18, 2022, to correct the name of the cholesterol medicine the columnist uses to Pravachol.  Here are a few multiple sclerosis (MS) stories that caught my eye last week: Low cholesterol and aggressive MS progression The story “Low Cholesterol May Reflect More…

Jasmine Iona Brown was diagnosed with multiple sclerosis (MS) in 2003 when she was pregnant with her son. Since then, the 50-year-old Tacoma, Washington, teacher has faced a number of challenges related to her MS diagnosis — fatigue, nerve pain, and cognitive issues. Her family, Brown said, was neither…

Ah, after living the majority of the last three years of my life indoors, I do tend to spark conversation with my carers. But if I keep quiet, they’re more than happy to do so, too, as they repetitively deal with the rigmarole of getting me ready every morning. It’s…

If you have multiple sclerosis (MS), you’ve probably had several MRIs “with” and “without.” The “with” means injecting a contrast agent containing gadolinium into a vein. The agent then travels into the brain, where it “lights up” areas of active inflammation that otherwise would be difficult or impossible…

Just like a surgeon’s prize hand or a ballerina’s plié, my mind has been my most valued asset. That’s been true all my life, through realizing my passion for science, achieving my undergraduate degree in biomedical science, and even keeping myself sane during the dark days of paralysis following…

A voracious reader since childhood, I’ve often lost myself inside fictional worlds — often preferring them to the real one where I’m forced to live. This was especially true when I was diagnosed with multiple sclerosis (MS) almost 18 years ago. When my eyes and ears were focused on…

The following multiple sclerosis (MS) news stories caught my eye last week: Stem cell transplant and nerve fiber damage This small study of 43 people with relapsing-remitting multiple sclerosis who underwent autologous hematopoietic stem cell transplant (aHSCT) in Sweden reports that their disability during the period of…

Neurologists in Colombia agree that sexual dysfunction is burdensome and affects quality of life in major ways for people with multiple sclerosis (MS), but some still don’t ask their patients about it, a survey study reported. Findings also revealed that many neurologists there do not use formal tools…

There are moments in life that have surprising effects on us. I’ve had two. The first was when I was about 9, and my mother informed me that my headmaster had been told I’d disappeared after school. Fair enough in hindsight. I presume she’d phoned the police as well, but…

“I thought it would never happen to me.” I’ve lost count of the number of times I’ve heard someone utter that phrase during my four decades in the news media. Last week, it happened to me. About three years ago, my wife and I bought a condo as a…

While helping me get dressed this morning, my wife handed me a T-shirt from a dresser drawer across the room. It happened to be a shirt commemorating an event from my pre-multiple sclerosis (MS) past. It’s what you might call a “been there, done that, got the T-shirt” kind…

There’s a poignant scene in “Forrest Gump” in which the title character and his best friend, Jenny, walk up to the shack where she was raised (and was raped and abused by her drunken father). She stares at the place for a moment and then begins hurling things…

Study Supports MS Disability Test Score as Outcome Measure in Trials Adding two other disability measurements to the commonly used Expanded Disability Status Scale (EDSS) is a good idea, not only for trials but also in everyday patient assessments as well. Measuring our level of disability using only…