August 9, 2017 Columns by Judy Lynn Mitigating that Pesky Canadian Particulate Matter Last week saw much of the Pacific Northwest blanketed by smoke from wildfires in British Colombia. As I pondered the gray haze Thursday, I recalled a piece from a fellow columnist in June aboutĀ air pollution and MS. In addition to MS, I also have asthma. Therefore, the health…
August 9, 2017 Columns by Mike Knight Paying Caregiver’s Dues: Giving as Good as I Get The plastic mustard bottle hurtles toward the kitchen floor. Like a statue I stand, mouth agape, as it somersaults in slow-motion through space. Only seconds before, Iād removed the top of the bottle to scrape one final dollop from it onto the sandwich…
August 8, 2017 Columns by Patricia Silva, PhD There is a Shortage of Anatomical Donation of MS Brains Multiple sclerosis damages human brains, so MS researchers often study mice brains. How can multiple sclerosis be cured or prevented without studies of human brains? Researchers need the anatomical bequests of MS brains. Harvard Brain Tissue Resource Center Harvard University specifically collects and studies brains (and brain tissue),…
August 8, 2017 Columns by Teresa Wright-Johnson Lessons Learned from Loss: A Tribute Why me? Why us? What have I done? How much loss can I endure? Weāve all been here. This was one of my weeks. The unexpected death of my nephew hurled me into this episodic gloom. I asked āWhat else is going to happen? Is life trying to…
August 8, 2017 Columns by Ed Tobias ‘Easy Rider’ Dreams? Say Yes to the Motorcycle Reading some social media posts the other day, I found myself humming a line from a late 1960s Arlo Guthrie song: “I don’t want a pickle. Just want to ride on my motor-sickle.” I didn’t think it was possible for someone with MS to ride a “motor-sickle.” It…
August 7, 2017 Columns by Ed Tobias MS News That Caught My Eye This Week: Resistance Training, Tysabri Report, Cognigram, and Depression Resistance Training Can Slow MS Patientsā Brain Shrinkage, Clinical Trial Indicates Over the years, studies have shown the benefits of various types of exercise in improving MS symptoms. But here,Ā Alice MelĆ£o reports about a small…
August 4, 2017 Columns by John Connor Itchy Arms and the Internet: Making Rash Assumptions It’s been an incredibly bad few weeks, so I’m not surprised that I spent recent days wondering if I had incurable liver disease. Living with chronic illness, plus the internet, plus nowĀ justifiable hypochondria, is a very dark nexus. It started with a UTI thatĀ has been persistent for nigh…
August 4, 2017 Columns by Ed Tobias A Warning About ‘Stem Cell Tourism’ I regularly see comments on various social media sites from MS patients who have traveled, or who plan to travel, outside the U.S. to be treated with stem cells. Some of these patients have reported excellent results and a reversal of symptoms. Others have died. Many MS patients…
August 3, 2017 Columns by Jennifer (Jenn) Powell Exchanging a Sole for a Soul What is it about the passage of time that can make you look at the same situation with diametrically differing points of view? I have come to find that my acceptance of, and zest for, life has been congruent with the appearance and progression of…
August 3, 2017 Columns by Laura Kolaczkowski The Importance of Patients Having a Voice in MS Research I recently spent time at the annual meeting of theĀ Drug Information AssociationĀ (DIA), listening to presentations and talking with industry representatives about the multiple sclerosis community’s needs. DIA is a nonprofit association that has been around more than 50 years. Their primary interest is the development of healthcare…
August 3, 2017 Columns by Tamara Sellman The MS Alphabet, Part 2 of the Letter ‘G’: Gilenya, Genetic, Glial Cells, and More (Editorās note: Tamara Sellman continues her occasional series on the MS alphabet with theĀ second of two columns about terms starting with the letter āG.ā Read more “G” terms here.) Mastering an understanding of multiple sclerosis means you need to mind your Ps…
August 1, 2017 Columns by Patricia Silva, PhD Accessible, Affordable Housing Is Not Optional Accessible housing is not optional for people with disabilities. Poverty and disability too often combine for too many people. It is one thing to know this double whammy exists intellectually. To see the impact in a person packs a visceral punch that cannot be denied. Think of how profoundly…
August 1, 2017 Columns by Teresa Wright-Johnson Use the Power of Writing to Lift Yourself, Others The art of writing has been my refuge during some incredibly difficult times. Writing also serves as a vessel to express my joys, life lessons, and messages I wish to share with others. Writing is therapeutic. Expressing myself through prose and poetry allows me to connect with others. It…
August 1, 2017 Columns by Ed Tobias MS Docs Tell How They Choose Treatments What does your neurologist consider when he or she is deciding how best to treat your multiple sclerosis? A recent report from Spherix Global Insights, a business intelligence and market research company that looks at drug trends every quarter, sheds some light on that. In my…
July 31, 2017 Columns by Ed Tobias MS News That Caught My Eye This Week: Myelin Repair, Ocrevus and Insurance, Cell Therapies In case you missedĀ them, here are some news stories that appeared in MS News Today that caught my eye over the past week: Q Therapeutics Approved to Start Trial of Cell Therapy Aiming to Restore Myelins Those of us with MS know that if something can…
July 28, 2017 Columns by Jamie Hughes Sharpen Your Sense of Joy Believe it or not, summer is nearing its end, and a new school year is upon us. I donāt know about you all, but I loved back-to-school time. It meant new things to learn, friends to make and activities to try. It involved a new wardrobe, too, but…
July 28, 2017 Columns by John Connor Going Solo… Sort Of In my youth, I hitchhiked the breadth of North America ā Canada, from east to west. I had 16 first cousins in the country and only my parents back at home. My quest was to meet them all. Which I duly did. I traversed the whole of the Trans-Canada…
July 28, 2017 Columns by Ed Tobias MS Therapies: What’s Hot, What’s Not Ocvevus (ocrelizumab) is off to a running start, Tecfidera (dimethyl fumarate) leads the pills and the four injectable multiple sclerosis drugs are being used by fewer MS patients. But Copaxone (glatiramer acetate injection) remains the leader of the pack of the disease-modifying therapies. Those are…
July 27, 2017 Columns by Jennifer (Jenn) Powell Choosing to Infuse Myself with Optimism Living with an incurable, progressive disease can be physically and emotionally exhausting. Iāve always been a girl who thrives on proof and assurances, and there seem to be little of either where MS is concerned. Itās taken me quite a while to settle into the awkward instability that is ambiguity,…
July 27, 2017 Columns by Laura Kolaczkowski Got Questions? iConquerMS Seeks Answers If youāve followed my writing, you already know I am committed to advancing patient-centered research and care. I am the lead patient representative and co-principal investigator for iConquerMS. One of the main goals of iConquerMS is to elevate the voice of people with MS into research. How do…
July 27, 2017 Columns by Tamara Sellman The MS Alphabet: Fatigue, FGF, Fasciculations and More F Words Editorās note: Tamara Sellman continues her occasional series on the MS alphabet with this second of two columns about words starting with the letter F.Ā Read the first “F” column here. When it comes to multiple sclerosis, mastering an understanding of the disease means you…
July 26, 2017 Columns by Cathy Chester 31 Lessons I’ve Learned in 31 Years of Living with MS I was diagnosed at a time when no approved medications for MS existed and there was no internet to search for information about the disease. I was in my late 20s, dating the man I’d eventually marry and wondering how this new normal would affect my life. I’ve…
July 26, 2017 Columns by Judy Lynn Cruising to Vacation Success with Adequate Preparation Earlier this month, I was fortunate to enjoy a beautiful cruise through the inside passage of Alaska. Having done my due diligence (see “Cruising Solutions“), I was prepared with an over-the-counter medication, as well as some extra baclofen. Both were recommended by my pharmacist to help curb…
July 26, 2017 Columns by Mike Knight Dialing for MS Dollars: Fighting ‘Repeal and Replace’ One Call at a Time I have written multiple iterations of this column trying to keep pace with the disastrous healthcare bills being presented first in the U.S. House of Representatives and now the Senate. But I canāt keep up with them. There are just too many and…
July 25, 2017 Columns by Teresa Wright-Johnson Like A Skyscraper: Tall, Strong and Monumental My columnĀ last week focused on the difficulties of managing the emotions that accompany MS. I sincerely thank you for your responses, stories and words of encouragement. Again, the one thing that was apparent is that most of us fight this battle. We are left to sit with…
July 25, 2017 Columns by Ed Tobias How Do You Answer ‘Are You Doing OK?’ When Asked About Your MS? “Are you doing ok?” It’s one of those questions we all get. And it’s one that most of us don’t like to answer. How do you respond when someone asks you that question? #1 You can say “Yes, I’m fine, thanks,” even if you’re not OK, and be…
July 24, 2017 Columns by Debi Wilson How MS Helped Me Embrace Living in the Present My multiple sclerosis (MS) brings fatigue, pain, and instability into my life, but surprisingly, it also makes me more aware of my life and surroundings. For me, that means being more aware in the present moment and focusing on the good in my life right now. Living in…
July 24, 2017 Columns by Ed Tobias MS News That Caught My Eye This Week: Ocrevus and Insurance, Intimacy Issues, Breastfeeding In case you missedĀ them, here are some news stories that appeared in MS News Today that caught my eye over the past week: Ocrevus Is Popular Among Neurologists, but Insurance Is a Growing Concern, Report Concludes Some great marketing and PR efforts gave Ocrevus a…
July 21, 2017 Columns by John Connor The Mouth that Roared After 10-odd ā indeed, increasingly odd ā years, I presumed I’d become something of a gnarled hand at MS. If you read about something on practically a daily basis, you begin to think you’ve got pretty comprehensive knowledge of a subject. Sure, in the past, events happened that I…
July 21, 2017 Columns by Ed Tobias Do MS Patients in the UK Get the Right Treatment Quickly Enough? About two years ago, a report by the European Multiple Sclerosis Platform stated that only 21% of MS patients in the United Kingdom were receiving any kind of disease-modifying therapy. This is compared to 40% in France and 69% in Germany. Now, the U.K. branch of pharmaceutical giant Sanofi has published a report of its own, "The Missing Pieces." The report tries to answer, "Why is this so?" Here are some of the answers that were received online from a small group of healthcare professionals and MS patients: Nearly three-quarters of U.K. healthcare professionals think that people with MS face delays in starting on disease-modifying treatments (DMTs). Nearly one-quarter of MS patients there reported being unaware of some treatments that could help delay the onset of disability. Only half of people with MS say disability was discussed with their healthcare professional when they were first diagnosed, yet 69% of the healthcare professionals say it was discussed. Only a third of those patients say that "disability" is discussed in their regular MS appointments. Two-thirds of people with MS say that maintaining independence is their main treatment goal, followed by reducing relapses. The report also says that healthcare professionals believe the primary reason that DMTs are slow to be prescribed is lack of access in the U.K. to neurologists who specialize in MS. And, it says, 62% of MS specialist nurses and 47% of MS specialists thought this delay is also because of a shortage of healthcare facilities needed to deliver DMTs. Now, it needs to be noted that this survey involved only 100 MS specialist healthcare professionals and 120 MS patients in the U.K. And, as mentioned earlier, the survey was conducted by Sanofi, which claims to be the fourth largest pharmaceutical company in the world. Sanofi makes two big-time MS drugs: Aubagio (teriflunomide) and Lemtrada (alemtuzumab). Naturally, it has a vested interest in seeing that MS patients are treated with DMTs. (Full disclosure: I recently was compensated by Sanofi Genzyme to attend a meeting of "digital influencers" that the company held at its U.S. headquarters.) But drug sales aside, a case certainly can be made for treating MS patients with DMTs quickly after patients are diagnosed, and many drugs currently on the market have shown that they are able to modify the course of MS. And there's a case to be made about a need for better patient-healthcare provider communication. So, my question is: How do MS patients in the U.K. feel about access to DMTs? And to MS care, in general? Is this small report correct about the lack of knowledge by patients about their treatment options? Is it correct about the lack of MS specialists and resources in the U.K.? Do MS patients outside of the U.K. have similar concerns?