August 3, 2018 Columns by Ed Tobias Healthcare Is Expensive, So Why Don’t We Comparison Shop? If you’re going to buy a car, do you limit your shopping to just one car dealer? If you need gas, do you drive past three inexpensive service stations because someone told you to fill up at a fourth, where the price is much higher? I don’t think so.
August 2, 2018 Columns by Jennifer (Jenn) Powell Tune into the World and See As I pulled into the overcrowded Trader Joe’s parking lot, I was grateful to see an open handicapped space. Once parked, I turned off the car engine and paused; the heat was oppressive. Ten days post-chemo/Solu-Medrol (methylprednisolone) and my fatigue was as thick as the stagnant humidity. I…
August 2, 2018 Columns by Laura Kolaczkowski The Many Uses of Botox for MS Care There are many things that confuse me, particularly in the medical area. Perhaps thatās why I am more comfortable thinking about MS patients’ quality of life rather than being into the hard science of medicine and understanding how medicines work. Iām thinking in particular of botulinum toxin, more…
July 31, 2018 Columns by Teresa Wright-Johnson Making Myself a Priority Last week, I wrote about climbing through grief. This week, I will focus on what I learned in the throes of the cycle of grief. Several people share the opinion that I do too much. My cousin often says that he wants me to say no to…
July 31, 2018 Columns by Ed Tobias What I’ve Learned About Falling After 37 Years with MS Leaving a restaurant the other evening, I was stepping off an unusually high curb. Right cane down, left cane down, swing the right leg, swing the left leg, and … uh-oh. Down I go. I’d been asking for it. I’d needed to change the electrodes on the Bioness…
July 30, 2018 Columns by Ed Tobias MS News that Caught My Eye Last Week: Popular DMTs, Data Analysis Predicts MS, Remyelination Study Oral DMTs Still Common 1st Therapy for New MS Patients but Ocrevus Having Impact, Market Report Says Deciding on what therapy to use is a tough decision for people with MS and their doctors. That’s especially true for someone who is newly diagnosed. Do you go with…
July 27, 2018 Columns by Jamie Hughes What Are You Living For? Maybe itās because Iāve been listening to too much Jackson Browne lately, but Iām distressed by the state of the world these days. And itās not the big-ticket stuff like politics or social dysfunction thatās got me worried, either (though both take turns keeping me up nights). Itās…
July 27, 2018 Columns by John Connor The Graduate The queue to get into Canterbury Cathedral in bright sunshine seems endless. The quandary of being Dracula strikes me ā I’ll either fry in the sun or fry in a church set up during the Roman occupation of Britain! Luckily my condition is MS, so we seek solace…
July 27, 2018 Columns by Ed Tobias A Fall, a Scratch, and an MS Lesson Learned In mid-July, the woman who writes the Multiple ExperienceS blog had a little fall. As Jamie explains, her rollator went forward, but her feet didn’t. The fall left a small cut on her knee. Over the next few days, Jamie’s knee swelled, and a trip to her doctor,…
July 24, 2018 Columns by Teresa Wright-Johnson I Climb Through Grief from the Bottom Up It has been a while since Iāve written a column. Within one month, two of my relatives have passed away. Spiritually, I believe in eternal life. However, in my earthly existence, death has left its sting. Multiple deaths, physical pain, and disappointments have catapulted me into a cycle of…
July 24, 2018 Columns by Ed Tobias Health Insurers Do Deep Data Dive to Estimate Your Healthcare Costs Every time you post something on social media, pay a bill online, or make an online purchase you leave behind little data footprints. Now, an extensive report by National Public Radio and the nonprofit news organization ProPublica is pulling the curtain back on companies who are…
July 23, 2018 Columns by Ed Tobias MS News that Caught My Eye Last Week: Predicting MS Progression, MS Links to Other Diseases, Cladribine, Diet Discussions Brain Iron Levels Correlate with MS Progression, Disability Risk, Study Shows Currently, doctors measure shrinkage in the brain as a way to predict physical and cognitive decline in people with multiple sclerosis (MS). But it takes a long time to see this brain atrophy on a standard…
July 20, 2018 Columns by John Connor Phew, What a Scorcher Phew, what a scorcher. The summer of 1976 was the last time it was this hot in the United Kingdom. My lasting memory of that summer was not lazing on a beach, but sweltering as a relief manager in an “off-licence,” which is a liquor store. I probably sold…
July 20, 2018 Columns by Ed Tobias Are These Diseases Early MS Warning Signs? It’s not unusual to hear someone say, “I was diagnosed with MS in [fill in the year], but I probably should have been diagnosed five or 10 years earlier.” Now a study reports that during the five years before someone is diagnosed with multiple sclerosis (MS), it’s quite…
July 19, 2018 Columns by Jennifer (Jenn) Powell Getting to ‘Yes’ with MS: Fear Beware! I am a self-described homebody. I enjoy social gatherings and getting out, but I always look forward to coming home. Within five minutes of pulling into the garage, I am in sweats and a T-shirt. My demeanor immediately softens. Home is familiar, and in familiarity I find safety. Sometimes, safety…
July 17, 2018 Columns by Ed Tobias My Lemtrada Journey: A Little Dip on the Roller Coaster I’m now three months past my second round of Lemtrada treatments, so it’s time for an update. I began Lemtrada (alemtuzumab) in December 2016, hoping it will be the last disease-modifying therapy that I’ll ever need to use. I’ve had peaks and valleys since this treatment began, thus…
July 16, 2018 Columns by Debi Wilson Is It an MS Diagnosis or Something Else? I am told I have primary progressive multipleĀ sclerosis (PPMS), and my symptoms appear to be in line with that diagnosis. I continuallyĀ have a slow gait, leg weakness, balance issues, and fatigue. There is never a break from those symptoms. Intermittently, I have cognitive issues, slurred speech,Ā and burning…
July 16, 2018 Columns by Ed Tobias MS News That Caught My Eye Last Week: Fasting Study, ‘Bad’ T-cells, Brain Volume, Ocrevus in Scotland Missouri Trial to Examine if Fasting Alters Gut Microbiome and Immune System of RRMS Patients in Helpful Ways The impact of various diets on multiple sclerosis (MS) has been studied, but this new study will look into whether fasting has an impact. The researchers at Washington University…
July 13, 2018 Columns by Jamie Hughes Giving Your Brain a Good Stretch I turned 40 this year, and it seemed like a mighty fine time to stop and take stock. After all, Iām at the midway point, and if I want the second half of my life to be as fun and productive as the first, I have to make…
July 13, 2018 Columns by John Connor Steering My Own Boat and Making a Splash The U.K.’s National Health Service (NHS) turned 70 last week. In England, yes, we are mourning our semi-final defeat by Croatia in the World Cup, but to most of us, the NHS is the U.K.’s crowning glory. There are innumerable problems and proposed solutions involving the institution, yet…
July 13, 2018 Columns by Ed Tobias Medical Marijuana Could Mean Trouble for Gun Owners I’ve written before aboutĀ medical marijuanaĀ (MMJ) and its use by those with MS. I’ve also written about how MS affectsĀ gunĀ ownership. This column is about both MMJ and guns. Thirty-one states,Ā plus the District of Columbia, Puerto Rico, and Guam have legalized the use of marijuana for medical use.
July 12, 2018 Columns by Jennifer (Jenn) Powell A Hot Mess: Heat Sensitivity and MS I am a hot mess. No, really, I am a hot, sweaty, gel-pack-laden mess. My AC kicked it three hours ago, three hours before Orange County hit a record 112 degrees Fahrenheit. Mother Nature is drunk. And I am getting warmer. Heat is kryptonite to anyone with multiple sclerosis…
July 12, 2018 Columns by Laura Kolaczkowski My Sticker Shock From Ocrevus MS Clinic Bill I was talking on the phone with a friend who also happens to have MS. I warned her the extra noise was from me opening the stack of mail I’d been avoiding for a couple of weeks. I have my bills set up for auto-pay, so I was in…
July 11, 2018 Columns by Cathy Chester Research Shows Immune System Bacteria Link to MS Lately, much of my work has been focused on the relationship between the gut and MS. As I experience ongoing gut issues, I need to learn how to advocate for myself by learning as much as I can about gut bacteria and finding the right…
July 11, 2018 Columns by Mike Knight Out on a Stim: The Pros and Cons of FES Devices (Part 2) Second in a series. Read part one. The thing about functional electronic stimulation (FES) devices, at least to me, is waiting for them to engage. No matter how much I prepare myself, Iām still surprised ā on pins and needles, if you will ā…
July 10, 2018 Columns by Ed Tobias MS Hope or MS Hype? This Writer’s Dilemma Let’s say there’s an MS study reporting that researchers have discovered a substance that seems to prevent nerve cell damage. But they’ve only studied this on mice. Or, there’s another study that claims that something can help reduce MS pain, but the study involves only 19 patients. Or, an…
July 9, 2018 Columns by Ed Tobias MS News that Caught My Eye Last Week: Medical Cannabis in Australia, Solvents and Common Pollution, Ocrevus and PPMS Medical Cannabis Favored to Treat MS Spasticity and Other Ills by Doctors in Australia, Survey Finds I’ve been thinking about using medical marijuana to treat myĀ multiple sclerosisĀ (MS) spasticity ā specifically CBD oil. It appears that some healthcare providers would also think that’s a good idea. Most…
July 6, 2018 Columns by John Connor Down for the Weekend: World Cup Fatigue Hi, everyone. I’m absolutely exhausted. And it’s all the fault of the World Cup. Not from any sort of secondary exercise while watching games, but because it’s given me the week off work. England lost their last group match to Belgium on June 29. Their last 16 game…
July 6, 2018 Columns by Ed Tobias Big ER Bills for Little ER Visits A couple weeks ago, I wrote a column about medical bills suggesting that you trust, but verify those charges. A few days ago, I read about a type of emergency room fee that’s hard to trust. It’s being charged by many hospitals, seemingly without consistency, and it can…
July 5, 2018 Columns by Jennifer (Jenn) Powell Stress and MS: Time to Chill How do you manage stress when you are stressed? How do you avoid letting stress dominate not only your mind but also your physical being? I wish I knew. At my first clinic following my MS diagnosis, the doctor warned me about stress and its effect on MS. I…