October 7, 2022 Columns by Ed Tobias Is Your Disability Ready for an Emergency Like Hurricane Ian? “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…
October 6, 2022 Columns by Benjamin Hofmeister Don’t Let the Past and Future Be Obstacles While Living With MS 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. Itās what you might call a ābeen there, done that, got the T-shirtā kind…
October 4, 2022 Columns by Jamie Hughes When the Words Just Arenāt There: The Challenge of Talking About MS Thereās a poignant scene in āForrest Gumpā 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…
October 3, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: ODRS Test, Kesimpta, Coping Strategies, Dual Tasking 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…
September 30, 2022 Columns by John Connor How Did I End Up in a ’60s Cold War Spy Thriller? The constant light in my cell burned through my eyelids all night. Every night for days now. Prostrate on my back, I couldn’t even turn over to get away from it. Why me? I knew nothing. Wasnāt part of any organization. Had no power. Couldnāt influence anyone. How did I…
September 30, 2022 Columns by Ed Tobias My Wife and I Hit Some Bumps on Elton John’s Yellow Brick Road It wasn’t easy for my wife, Laura, and I to enjoy one of Elton John’s concerts on his Farewell Yellow Brick Road tour the other night. Sir Elton was appearing at Nationals Park, the baseball home of the Washington, D.C., Nationals. Having seen a couple of…
September 29, 2022 Columns by Stephen De Marzo My Faith Journey With Primary Progressive Multiple Sclerosis After being given the most life-changing, devastating news I’d ever heard ā āMr. De Marzo, you have textbook MS. As a matter of fact, you have PPMS [primary progressive multiple sclerosis].” ā the emotions and pictures that ran through my mind were vivid, horrific, angry, and upsetting, to say…
September 26, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: Gut Bacteria, Strength Training, Robots, Gilenya Patent Gut Bacteria Are Altered in MS, Linked to Disease Progression Several studies have indicated that the composition of gut bacteria in people with MS is different from that of healthy people. But earlier studies didn’t take into account environmental factors, such as where the study subjects lived or what…
September 23, 2022 Columns by John Connor The Smog of Tax Returns: An MS Fairy Tale Once upon a time, children, there was a very grumpy bear who kept a low-level, incessant growl going all day. And often, well into the night, too. If his family were lucky, this would only last about a week, but usually it would last a lot longer. He was snappy…
September 23, 2022 Columns by Ed Tobias My Wife Says I Should Follow My Own (MS) Advice I have to be honest: I havenāt always been honest. I donāt always practice what I preach. My wife called me out on that as we watched an interview I did recently about multiple sclerosis on Montel Williams’ podcast. āYou should follow your own advice,ā she told me.
September 22, 2022 Columns by Benjamin Hofmeister Uncomfortable Liminal Spaces: When We’re Caught Between Here and There Every time I find myself in a multistory building, I end up on an elevator. Itās not as though Iām too lazy to take the stairs ā well, OK, I am lazy ā but in this case, itās because my wheelchair wonāt climb one, much less a flight of them.
September 20, 2022 Columns by Jamie Hughes May I Help You?: Why Accepting Assistance Is Always the Wisest Choice My eldest son just started high school, which makes me feel both incredibly old and somewhat proud of myself for surviving this long. People have been telling me the teenage years are the hardest, but I have a leg up since I used to be a high school teacher. The…
September 19, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: EBV, Stem Cell Transplant, NurOwn, Progression Without Relapse T-cells Targeting Epstein-Barr Virus at High Levels in MS Patients The evidence of a link between the Epstein-Barr virus (EBV) and multiple sclerosis (MS) continues to mount. The current thinking is that the immune responses that fight EBV may drive the attacks against the myelin nerve coating, which is…
September 16, 2022 Columns by John Connor All Quiet on the MS Front ā Well, Nearly Note: The second half of this column details digestive symptoms that may make readers uncomfortable.Ā In the five years that Iāve written this “irreverent journey with multiple sclerosis (MS),” quoting from my very own bio at the foot of this column, I think Iāve only covered this “quiet”…
September 16, 2022 Columns by Ed Tobias An Interpretation of My MS Dreams: What Freud Might Say I studied psychology in college, but haven’t thought much about Sigmund Freud since then. I did the other night, though. I had a couple of puzzling dreams. Thinking about them after I woke up and putting a little of that college psychology to work, the puzzle became less puzzling. I…
September 15, 2022 Columns by Stephen De Marzo Is Life a Form of Physical Therapy for PPMS? I guess the short answer to the headline’s question is āIt depends.ā After my primary progressive multiple sclerosis (PPMS) diagnosis in March 2021, when I was 58, I had many questions that could be collected into the five W’s: who, what, when, where, and why. I’ll throw in…
September 14, 2022 Columns by Beth Ullah My Wedding Anniversary Reminds Me to Find Strength in Silver Linings It’s in my nature to get a little reflective around significant dates, such as New Year’s and the changing of the seasons. I love that these occasions represent change and starting fresh. So celebrating my seventh wedding anniversary on Aug. 29 has made me rather contemplative, more so than in…
September 12, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: Immunoadsorption, Off-label DMTs, Resistance Training, COVID-19 Vaccines Immunoadsorption Better Than 2nd Round of Steroids for MS Relapse This is an interesting study, particularly because of the physical problems that can be caused by significant steroid use over the years. Of course, immunoadsorption is essentially a blood transfusion; it involves collecting a patientās blood; separating out its…
September 9, 2022 Columns by John Connor A Reminiscence About Our Glorious ā and Hot ā Summer It was a glorious summer for those of us lucky enough not to be engulfed by forest fires, face crop destruction by severe drought, or have to manage the debilitating effects of multiple sclerosis (MS), which are exacerbated by crippling heat. Over 60% of people with MS say…
September 9, 2022 Columns by Ed Tobias Need Help Choosing the Right Medication to Treat Your MS? It’s not easy choosing a multiple sclerosis (MS) medication. There are shots and pills and intravenous infusions. The National Multiple Sclerosis Society lists more than 20 disease-modifying therapies (DMTs) on its website. Some, such as Lemtrada (alemtuzumab), Ocrevus (ocrelizumab), and Tysabri (natalizumab), have proven to…
September 8, 2022 Columns by Benjamin Hofmeister My Stubbornness Has Helped and Hindered Me in Life With MS Thereās a slight chance that I might be stubborn. I donāt really see it, but my wife, parents, siblings, relatives, friends, and former teammates all seem to think so. I personally think that theyāre mistaking my drive and strong willpower for stubbornness, but I suppose I respect their opinions enough…
September 6, 2022 Columns by Jamie Hughes What a Novel Idea: The Many Benefits of Predictability When I was a kid, I adored novelty. I always wanted something different to experience, a new place to go. In my mind, there was nothing worse than doing the same thing week in and week out. However, Iāve come to appreciate routines as an adult, especially because…
September 2, 2022 Columns by John Connor Thanks to MS Progression, My Weight Became a Problem My weight went off the scale when my multiple sclerosis (MS) meant that I could no longer safely get on the scale. This was probably about four years ago. In them there halcyon days (for me, anyway), I still shared our second-floor bedroom (first-floor, for those of us here…
September 2, 2022 Columns by Ed Tobias Researchers Hit a Bump on the BTK Inhibitor Road A little over a year ago, I wrote about whether Bruton’s tyrosine kinase inhibitors (BTKi’s) might be the next big thing in multiple sclerosis (MS) treatments. BTKi’s are small molecules that selectively block an enzyme thatās important for the activation of B-cells in the immune system and…
August 29, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: Epstein-Barr, Aqua Exercise, Diagnosing SPMS, Myelin Repair Epstein-Barr Virus and MS Risk: New Link to Mono Found in Study Add this study to the mounting evidence that there’s some type of association between the Epstein-Barr virus (EBV) ā the virus associated with mononucleosis ā and multiple sclerosis. I’ve never had mono, but several people with…
August 26, 2022 Columns by John Connor Column Saved by the Same Olā Side Effect to an Antibiotic This headline is a bit of a cheat. OK, itās a big cheat. When youāve been writing a column for five years, thereās immense satisfaction when youāve finished it each week. Thereās even more when itās passed through the editing process. Sometimes this can get somewhat tricky. The trouble is…
August 26, 2022 Columns by Ed Tobias Do You Cry and Don’t Know Why? It Might Be PBA I often see posts on social media from people with multiple sclerosis asking if crying for no reason is an MS symptom. It can be. Laughing for no reason can be, too. Both can be severe, persistent, unremitting, and unpredictable. The medical name for this is…
August 25, 2022 Columns by Stephen De Marzo The Difference Between Living and Existing After My PPMS Diagnosis Itās been a year and a half since I was diagnosed with primary progressive multiple sclerosis (PPMS). I still have use of my limbs and am able to walk, albeit shakily, without a walker. My eyesight has not been affected, I drive, and am able to carry on a…
August 23, 2022 Columns by Jamie Hughes Itās OK Not to Be OK: What to Do When You Feel Stuck in a Rut For the last few months, Iāve been mired in something I can only describe as a funk. My job, my family, my faith, my entire life ā no matter what aspect weāre talking about, I felt like I was stuck. I mean like soul-in-a-straitjacket stuck. Honestly, I hadnāt felt anything…
August 22, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: PBA, Pregnancy, Interferon-beta, Pediatric MS Test Early Detection of Pseudobulbar Affect May Help Ease MS Symptom I often see posts on social media from people with MS asking if crying for no reason is an MS symptom, because it happens to them. I didn’t know that apparently, it is. Laughing, too. This report says…