February 3, 2023 Columns by Ed Tobias A Primer on ABLE Accounts for Americans With Disabilities 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…
February 2, 2023 Columns by Benjamin Hofmeister Eating Comfort Food Can Be Uncomfortable With MS Summer is one of the cruelest times of year for people with multiple sclerosis (MS). Thanks to Uhthoffās syndrome, it’s hard to enjoy all the fun that comes with warm temperatures. I donāt seem to sweat anymore (not that it helps much in our high humidity), so I…
January 30, 2023 Columns by Ed Tobias MS News Notes: Myelin, SAR443820, Teenagers and Sleep, NICE Standards Welcome to āMS News Notes,ā a weekly Monday morning column where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Hereās a look at whatās been happening: A protein to restore myelin? I usually don’t like to comment on stories about mouse studies, because…
January 27, 2023 Columns by Ed Tobias Does Marijuana Help Your MS Symptoms, or Is It an Illusion? A recent question on the MS News Today Facebook page generated some buzz about getting a buzz on to treat your multiple sclerosis (MS). The question was, “What helps you the most to manage your daily life with MS?” Many people with MS said the thing that helped…
January 26, 2023 Columns by Benjamin Hofmeister MS Makes Me Feel Like a Child Again, and Not in a Good Way The other day, my middle child opened the door while I was in the bathroom. If you have children, a surprise visit in what should be a sanctuary isn’t unusual, but in this case, what he said was. He observed me aboard my toilet and shower chair, which progressive…
January 25, 2023 Columns by Beth Ullah MS cognitive fog is the hardest symptom for me to accept āYou only begin to grasp the import of an event ā and its larger implications vis-Ć -vis your life ā long after it has entered into that realm marked āmemory.’ā ā Douglas Kennedy, “The Moment“ I am reading my first book since multiple sclerosis (MS) fatigueĀ reared its…
January 23, 2023 Columns by Ed Tobias MS News Notes: Tascenso ODT Approval, Baclofen Disdain, Myelin Welcome to āMS News Notes,ā where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Hereās a look at whatās been happening: Gilenya alternative The disease-modifying therapy (DMT) Gilenya (fingolimod) has been around since 2010. Now the U.S. Food and Drug Administration has…
January 20, 2023 Columns by Ed Tobias Could the Key to New MS Treatments Be in Outer Space? As you read this, a group of scientists is doing multiple sclerosis (MS) research high above the earth. Their laboratory is in orbit about 250 miles up, aboard the International Space Station. Working with researchers at the New York Stem Cell Foundation (NYSCF), astronauts have been helping…
January 19, 2023 Columns by Benjamin Hofmeister Multiple Sclerosis Memory Issues Force Me to Use New Methods Before multiple sclerosis (MS), I was pretty proud of my memory. For the most part, I still am, but like many others with this disease, I now have trouble recalling information. For me, it’s one of the most irritating, (sometimes even infuriating), cognitive issues associated with MS. I…
January 16, 2023 Columns by Ed Tobias MS News Notes: COVID-19, Gut Bacteria, Remyelination, Stem Cells Welcome to āMS News Notes,ā where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Hereās a look at whatās been happening: Could COVID-19 trigger MS? Since the start of the COVID-19 pandemic, there have been scattered reports of people who’ve developed neurological disorders,…
January 13, 2023 Columns by Ed Tobias MS Flares, Relapses, Exacerbations: How Much Do You Know? “I was told I’m in a flare-up,” a newly diagnosed person with multiple sclerosis (MS) wrote to a Facebook group the other day. She said the flare-up had been going on “for a while now” and wondered when she could expect it to calm down. After I pondered…
January 11, 2023 Columns by Beth Ullah With an Epilepsy Diagnosis, I Face Another Battle With Chronic Illness āThe secret of change is to focus all of your energy, not on fighting the old, but on building the new.ā ā Dan Millman I’m now living with multiple chronic illnesses. Lately, time has been rushing past like a ravenous flood, or standing still like a lonesome statue. In…
January 10, 2023 Columns by Jamie Hughes Time Is (and Isnāt) on Your Side: How MS Helps Us Know What Matters One of my favorite episodes of āI Love Lucyā is the one where Lucy and Ethel get up to some hijinks (and donāt they always?) in a candy factory. You know the one. At first, the bonbons come down the belt slowly, each one easy to wrap. But…
January 9, 2023 Columns by Ed Tobias MS News Notes: PoNS Online, Foralumab, Masitinib, Gaslighting Welcome to āMS News Notes,ā where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Hereās a look at whatās been happening: Tongue stimulator now easier to obtain A Portable Neuromodulation Stimulator (PoNS) is a mouthpiece that mildly stimulates nerves in the tongue that…
January 6, 2023 Columns by Ed Tobias FDA Approval of Ublituximab, Now Briumvi, Is Good News The new year is bringing a new disease-modifying therapy (DMT) to the multiple sclerosis (MS) arsenal. Shortly after Christmas, the U.S. Food and Drug Administration (FDA) approved Briumvi (ublituximab), which joins a small group of DMTs that aim to halt MS progression by knocking out certain…
January 5, 2023 Columns by Benjamin Hofmeister How I Respond to Typical Questions About MS From Children, Adults As Iāve probably mentioned before, my wife and I have three boys in grade school. This means that between school events, sports, and play dates, Iām around a lot of kids. Considering I use a wheelchair, my multiple sclerosis (MS) isnāt exactly invisible, so I’m often asked…
January 2, 2023 Columns by Ed Tobias Could Your Hip Pain Be Related to Your MS Steroid Treatments? My hips have hurt for several years. Right now, it’s just a dull ache. But there have been times when it has been a shooting pain. Hip pain isn’t necessarily connected to your multiple sclerosis (MS), but it could be. It might be caused by alterations in your…
December 29, 2022 Columns by Benjamin Hofmeister This New Year, I Resolve to Let Myself Hope The new year is just a few days away, so if you haven’t already, you might want to start thinking about resolutions, if you’re so inclined. Although I personally don’t bother these days, about half of American adults do, although that number is declining. One study suggests that…
December 27, 2022 Columns by Jamie Hughes I Am What I Am: Embracing the Highs and Lows of MS If thereās one thing those of us who have multiple sclerosis (MS) know all too well, itās that life requires balance. Fellow columnists and I have written about the need to find a happy medium when it comes to mental, physical, and emotional well-being.
December 23, 2022 Columns by Jennifer (Jenn) Powell I’m Giving Myself the Gift of Grace This Christmas The ballerina twirls in the late afternoon light. As if on cue, Tchaikovsky’s “Nutcracker” suite begins to play. I’mĀ lost in the dimly lit ornaments as my mind wanders. I fall into a deep nostalgia. My mind is a montage of Christmases past. My 6-year-old self follows my dad as we…
December 22, 2022 Columns by Benjamin Hofmeister ”Twas the Night Before Christmas’: A Multiple Sclerosis Parody The holiday season is one of my favorite times of year. Multiple sclerosis (MS), of course, has a way of sucking the joy out of anything, but it can’t have my family’s Christmas. I might miss sleeping in, but our three boys have really brought the magic…
December 19, 2022 Columns by Ed Tobias MS News Notes: Brain Stimulation, Bright Light, ABA-101, Foralumab Welcome to āMS News Notes,ā where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Hereās a look at whatās been happening: Possible nonmedicinal treatment for fatigue, spasticity, pain Wouldn’t it be nice to find a treatment that helps people with MS handle three…
December 16, 2022 Columns by Ed Tobias Stress and MS Are Bad Companions, So Take It Easy This Holiday Season My condo was hit by Hurricane Ian in October. Less than a month later, it was hit again by Tropical Storm Nicole. I have a dog whose bark is shattering and a cat who likes to bite. The car dealer can’t find the title for the…
December 12, 2022 Columns by Ed Tobias MS News Notes: DMT Costs, Copaxone, EBV, Rituximab Welcome to āMS News Notes,ā where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Hereās a look at whatās been happening: Is cost a factor when deciding DMT use? Cost may be the elephant in the room when people with MS are…
December 9, 2022 Columns by Ed Tobias ‘Time Is Brain’: Managing Brain Atrophy With MS This is one of my “nobody ever told me that” columns. I was amazed when I read a comment from one of my “MS Wire” readers recently about brain shrinkage. “I’ve had MS since 2011. I had no idea about brain shrinkage,” she wrote. I guess I shouldn’t have…
December 8, 2022 Columns by Benjamin Hofmeister Being Able to Laugh at Yourself Is Vital When Living With MS I had a glass of wine thrown in my face on the evening of my wedding anniversary. I was taken completely by surprise ā well, maybe not completely. After all, the person who threw it has a reputation for that sort of thing. I was pretty irritated, though, because a…
December 7, 2022 Columns by Beth Ullah How I Plan to Have a Cracking Christmas With MS As an adult, it hasn’t been easy for me to get into the Christmas spirit. Planning festivities and buying gifts don’t come naturally to me. Perhaps it’s because adult life never ends, whereas as a student, I had holiday breaks that signified the beginning of the season, allowing me to…
December 6, 2022 Columns by Jamie Hughes ‘What’s the Worst That Can Happen?’: On Facing Fears With MS Well, dear readers, I finally did it. The recital Iāve been telling you about finally took place after several long delays and a good bit of scrambling, and all those singing lessons were finally put on display for a public audience. Iād like to tell you I stepped…
December 5, 2022 Columns by Ed Tobias MS News Notes: Sexual Dysfunction, Bladder Problems, AI, and More Welcome to āMS News Notes,ā where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Hereās a look at whatās been happening: A medication that may ease sexual problems for women with MS Sexual dysfunction is common among people with MS, affecting up…
December 2, 2022 Columns by Ed Tobias Are the MS Stages Still Useful in a Diagnosis? What’s in a name? Does it really matter if your multiple sclerosis (MS) is called relapsing or progressive, or secondary rather than primary? I’ve never thought so, and the International Advisory Committee on Clinical Trials in MS agrees with me. The panel is calling for new methods…