June 3, 2022 Columns by John Connor Romance Means We Took the Weekend Off MS, Nearly There is a more heavyweight subject I could inflict on you lot, but letās put our feet up this week. Even I can do it with the one leg. My wife, Jane, and I celebrated our 30th wedding anniversary last Friday. Youād have thought weād have planned a big…
June 3, 2022 Columns by Ed Tobias A Road Trip From Florida to Maryland With No Bladder Incontinence After two days ā 16 hours of it spent on the road ā and 1,104 miles, I hadn’t had a single accident. My bladder control meds must’ve worked. The semiannual trip my wife and I take between Florida’s southwest coast and the suburbs of Washington, D.C. is never…
June 1, 2022 Columns by Beth Ullah Tipping the Scale: When Todayās Choices Become Tomorrow’s Consequences Like watching a scale tip up and down, I’m constantly assessing how any choices I make could affect how I feel tomorrow, or even later today. Although my multiple sclerosis was as aggressive and unstable as a hurricane in my first few years with it, I’ve found a baseline…
May 27, 2022 Columns by John Connor How I Get Through My Days ā More Importantly, Please Tell Me How You Get Through Yours Todayās youth have to accumulate a range of skills. Everything changes so fast. Parents often have no idea what career their kids even want to follow. Do you know what a UX designer is? Me, neither. This latest social change was revealed to me in a recent Guardian article,…
May 27, 2022 Columns by Ed Tobias Another Busted Cane Leads to a Search for Something Better A few weeks ago, my cane mutinied. I’ve been using canes for about 20 years ā first one, and then a pair. I’m tough on them and put a lot of weight on them. I take them out in the heat, cold, and rain. I force them to rest on…
May 25, 2022 Columns by Beth Ullah It’s Time to Start Thinking About Seasonal Adjustments and MS The thought of summer approaching both worries and excites me. I’ve always preferred the changing of seasons and fair weather to the height of a season, even before my MS diagnosis. I prefer change and the idea of starting anew, as if it might be a remedy to the…
May 23, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: DMTs and Symptoms, Aquatic Exercise, Infections āHiddenā Disabilities Fairly Common at RRMS Diagnosis, Study Finds This headline doesn’t report the full nature of this story. In addition to being “fairly common,” the research concludes that disease-modifying therapies (DMTs) have little effect on these so-called “hidden disabilities.”Ā I don’t agree with that conclusion. Most of…
May 20, 2022 Columns by Jamie Hughes When MS Takes From Me, I Try to Give Back in Service to Others Last weekend was a busy one. On Friday, I had to drop my eldest son at school at 5:30 a.m. for a field trip and then pick him up at 11 p.m. A nap wasnāt in the cards, Iām sad to say, and at some point in the evening, I…
May 20, 2022 Columns by John Connor Get Stirring ā You Never Know What Kind of Soup Youāll Make In my cooking days, I always had a stock simmering away. Nothing was wasted. What had been frugality spurred on by self-imposed poverty ā first as a student, then in the struggling life of a garret writer ā later became the general political point of not wasting resources. It hurts…
May 20, 2022 Columns by Ed Tobias Hoping for Medical Debt Relief? This Nonprofit Just Might Help It may sound like a joke or a scam, but there’s a nonprofit organization called RIP Medical Debt that might pay off your medical debt. Yep, all of it. According to the organization’s website, RIP Medical Debt has paid off more than $6.7 billion of other people’s medical bills…
May 18, 2022 Columns by Beth Ullah After Standing Still, Finding My Next Step āThe carousel never stops turning.ā ā the TV drama “Greyās Anatomy” At the 2019 European Patients’ Forum Congress in Brussels, which focused on patient involvement in healthcare, attendees were invited to write down a list of goals they wished to achieve in the next 12 months. After rolling my…
May 16, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: Music, Resilience, Childhood Abuse, Exercise Biogen, MedRhythms Working on Music Therapy for MS Gait Issues This is music to my ears. Sorry, I couldn’t resist, but I’m a big music fan. Music in my ears really motivates me when I’m exercising. So the idea of using computer-based music therapy to improve someone’s gait has…
May 13, 2022 Columns by John Connor No Crisis, No Column? OK, Fine: Everything Takes So Long With MS This weekās been a relief. I havenāt had to dash to casualty or fallen over in my chair. Nor have I stirred up a ruckus with the health powers that be or bumped into a fellow MSer with an interesting tale. My knockabout personality undoubtedly has…
May 13, 2022 Columns by Ed Tobias Hunt for EBV Vaccine Gets a Boost From NIH The National Institutes of Health (NIH) is joining the search for a vaccine to attack the Epstein-Barr virus (EBV). This is a big deal for people with multiple sclerosis, because carrying the virus is thought to play a significant role in the development of MS. In fact,…
May 9, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: Cannabis, Keto Diet, Tysabri, MS Unknowns Cannabis āHighly Effectiveā Against MS Symptoms, Some Users Report I would’ve expected many users to report that cannabis has been highly effective at treating MS symptoms, not just some. But comments about this study on the MS News Today Facebook page indicate that people have mixed results. Even…
May 6, 2022 Columns by Jamie Hughes We Have to Make the Effort to Care Living with multiple sclerosis (MS) is hard. I know this is hardly a revelation, especially to those of us who struggle with it on the daily, but I felt like it needed to be said. I was scanning through articles on this site recently, seeing what my fellow…
May 6, 2022 Columns by John Connor A Conundrum of Low Blood Sodium Causes My Latest Health Scare “Well, this an idea for your next column, John,” my wife, Jane, said, a tad sardonically. At least I thought it was probably sardonic, as there was just a wisp of a razor-thin smirk glimmering at the corners of her eyes. This was because she was wearing a face…
May 6, 2022 Columns by Ed Tobias An Accessible Cruise With Family, Canes, and a Scooter Was a Breeze It’s not easy going for a cruise when a scooter and a couple of canes come along for the trip. I’ve done it with success a number of times in the past, and planning helps a lot. My wife and I just returned from our first first cruise since…
May 4, 2022 Columns by Beth Ullah Recovering My Self-esteem After Adapting to MS-related Incontinence Without hesitation, I would say that my bladder and bowel issues have been the hardest symptoms to manage and overcome following myĀ MS diagnosis. It comes down to one thing: the fear of having an accident in public.
May 2, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: PoNS, MS Survey, Nerve Damage Biomarker, Tolebrutinib PoNS Device for MS-associated Gait Problems Now Available in US One clinical trial showed that MS patients who used the portable neuromodulation stimulator (PoNS) device as part of an exercise program had greater improvements in gait than those using only the exercise program. A second trial showed that those…
April 29, 2022 Columns by John Connor The MSer Who Lay in Bed for 2 Years and Can Now Walk Again My column’s handle is “Fall Down, Get Up Again” because the first piece I wrote for Multiple Sclerosis News Today was titled “A Mountain to Climb with MS ā in My Living Room.” That column got me this gig five years ago. It was set in 2012, mind you,…
April 29, 2022 Columns by Ed Tobias Remembering My First MS Symptom What was your first MS symptom? Mine ā the one that made me realize something was really wrong ā was my inability to squeeze the toothpaste tube with my left hand one morning. Of course, there were earlier hints of trouble. I was unusually tired while attending a business…
April 25, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: Bone Marrow Infusions, ATA188, Enhanced MRIs, Costs Progressive MS Trial Finds Repeat Bone Marrow Infusion Safe, Feasible Two bone marrow transplant studies are reported in this story. The first, a tiny trial of just six people, assessed the safety of this procedure, which involves harvesting cells from their bone marrow, then infusing them into the bloodstream…
April 22, 2022 Columns by Jamie Hughes An Interview With Writer Edith Forbes: Living With MS Last year, I got the chance to read and review Edith Forbesā medical memoir, “Tracking a Shadow.” I thought it was an encouraging and thoughtful work, so I contacted her by email for an interview to share her thoughts with readers of this column. Forbes graduated from Stanford…
April 22, 2022 Columns by John Connor The Tricks of Intermittent Catheterization When Youāre in a Wheelchair For the few of you lot lucky enough not to know about intermittent catheterization, itās shoving a thin bit of plastic up the old (in my case) urethra so that you can pee. I am well aware of how bad plastic is for the planet, but in my open-and-shut…
April 22, 2022 Columns by Ed Tobias The High Cost of Living With MS I always knew that living with multiple sclerosis (MS) was super-expensive, but a new study is a real eye-opener. The study, published in the journal Neurology, puts the annual tab for MS in…
April 20, 2022 Columns by Beth Ullah MS and Emotions: Pessimism vs. Realism in Life With Chronic Illness There is an ongoing difference of opinion between my husband and me regarding my general outlook on life. I consider myself to be a realist, whereas he thinks I tend to err on the side of pessimism. I’m an overthinker. I’ve always felt things incredibly intensely. Interestingly, when I read…
April 18, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: Deep Brain Stimulation, IMCY-0141, Foralumab, Vumerity Select Brain Stimulation May Ease MS Tremor, But More Study Needed This is encouraging news for the large group of people with MS who are bothered by some sort of tremor. But the procedure to suppress these tremors isn’t simple. We’re talking about deep brain stimulation, where electrodes are…
April 15, 2022 Columns by John Connor A Winning Belt Turns Into WrestleMania It was a moment of clarity. Unfortunately, my attempt at making a bright, clear consommĆ© has for the moment turned into a muddled chowder! Even worse, it was writing this column that started it. Iāve written so often in this column about using my Molift assistive device for transfers…
April 15, 2022 Columns by Ed Tobias Upon Reflection, I’m Determined to Seize the Day Do you think about death? I do ā a lot. I mean, like almost every day. Don’t get…