August 31, 2017 Columns by Jennifer (Jenn) Powell Making Plans with an Unpredictable Disease I love getting together with family and friends, volunteering at the golden retriever rescue, attending events and keeping my calendar full. It is fulfilling to make plans, but as many of you with MS know, it is a paradox. The very plans that bring hope and happiness also…
August 31, 2017 Columns by Laura Kolaczkowski Ocrevus and Sweating Out MS Many of you are considering making the switch to Ocrevus (ocrelizumab) as your disease-modifying therapy for multiple sclerosis. This is a switch I made recently. There are so many questions and unknowns about how this treatment might help me, and Iām trying to…
August 30, 2017 Columns by Judy Lynn Is MS Pain Giving You Ants in Your Pants and Bees in Your Bonnet? It took two years and many doctors to finally receive my MS diagnosis. Frequent painful sensations, such as burning, itching, stabbing, and tingling in my arm and shoulder, led my providers and me on a wild-goose chase in search of other problems. When my speech and balance were…
August 29, 2017 Columns by Ed Tobias Get Me (with My MS) to the Beach I live at the beach, but I can’t get onto the beach āĀ not easily, anyway. My MS means that I need to use a beach buggy; sort of an electric wheelchair with super-big tires, to get around on the sand. For others who are not as fortunate as…
August 28, 2017 Columns by Debi Wilson The Pinball Wizard of Nerve Pain SometimesĀ the nerve pain caused by MS reminds me of a pinball machine. With the slap of the paddles the ball surges, bouncing sporadically, bells ringing, lights flashing; then the ball quietly comes to a stop and all of the commotion is silenced until the next slap. The sharp…
August 28, 2017 Columns by Ed Tobias MS News that Caught My Eye This Week: Hippotherapy, Smartphone Research, and the Military Horseback Riding Plus Standard Care Can Help MS Patients Improve Balance, Other Symptoms Absolutely, it can. I don’t need to read this study to know that because I’ve been there, done that. About five years ago, at 64, I got back on a horse for the first…
August 25, 2017 Columns by Jamie Hughes Exploring Systems Beneath the Streets, Beneath the Skin Our bodies are amazing creations, lovingly handcrafted by an infinitely powerful and creative God, and I never get tired of learning facts about how they work. For instance, did you know that 25 percent of adult bones are in the feet? Or that more bacteria are found…
August 25, 2017 Columns by John Connor My Wee Crisis, Part 1 Having not stood on a stage and attempted stand-up for some 30 years, I’m not in the habit of writing jokes for myself. Obviously, these days, I’d be a sit-down comic anyway, but I think my opening line would be a doozy: “As I self-catheterize, I’m probably the…
August 25, 2017 Columns by Ed Tobias How’s Your MS? Ask This App I’ve just added an app to my iPhone that’s designed to track how I’m doing day-to-day with my MS. Not only can the data it collects be useful to me and to researchers, the app also is fun to use. The app is called elevateMS. It’s…
August 24, 2017 Columns by Jennifer (Jenn) Powell Using Peace of Mind to Cope with MS In this chaotic worldĀ in which we live, it is hard to be still, to sit with nothing but our thoughts. There is always something to worry about or preoccupy our minds that never allows us to rest in the present. As I sit on the patio and write,…
August 24, 2017 Columns by Laura Kolaczkowski MS Advocacy Resources are Many Advocacy comes in many forms, and recently I wrote about what advocacy by individuals might look like. The other type of advocacy we have going for those of us with multiple sclerosis is the work done on our behalf by a large number of nonprofit organizations. Let…
August 23, 2017 Columns by Judy Lynn Building Toward Optimism: The ‘Tetris’ Effect In the video game “Tetris,” players fit falling puzzle pieces together in order to create the most complete picture. As the game continues, the pieces fall faster. Creating order and cohesion out of chaos is necessary, as it is a common human desire. I never liked “Tetris,” but…
August 23, 2017 Columns by Mike Knight Sole Survivor: My Life, One Step at a Time Footwear and shoes and journeys have been in my info stream (and on my mind) a lot lately. First, I stumbled onto a very fine column about shoes and MS written by Jennifer Powell (Exchanging a Sole for a Soul). Her essay resonated…
August 22, 2017 Columns by Patricia Silva, PhD Donating to the Rocky Mountain MS Center Tissue Bank Brain donation for multiple sclerosis research optimizes the chances that a cure might be discovered. It might result in a vaccine or other preemptive strike to prevent the disability from starting in the first place. As addressed in a previous column, there is a shortage…
August 22, 2017 Columns by Teresa Wright-Johnson The Heart of It All and Healing from Within āThe very beating of your heart has meaning and purpose.ā This is a quote from Andy Andrews in “The Butterfly Effect.” I have referenced this quote on several occasions. It speaks volumes because it affirms that we are here on purpose, not by chance. I did an…
August 22, 2017 Columns by Ed Tobias Congressmen Want Info About MS Drug Price Hikes, but Why? MS drug manufacturers are in the sights of two members of Congress The companies are Bayer, Biogen, EMD Serono, Novartis, Sanofi Genzyme, Teva, and Roche. U.S. Reps. Elijah Cummings and Peter Welch, two Democrats who sit on the House Committee on Oversight and Government Reform, are concerned about what they're calling dramatic price increases for some MS drugs produced by those companies. In a news release, the congressmen say the price hikes have come "without warning, cause, or justification." They've sent letters to the companies seeking information about their profits and expenses. The letters also ask for documents about pricing strategies, patient assistance programs, and drug distribution systems. Cummings and Welch point to an American Academy of Neurology study of drug prices as evidence that some pharmaceutical companies appear to be increasing the prices of their older, less expensive drugs to bring those prices in line with those of the newer, more expensive DMTs that are available today. This kind of practice is known as āshadow pricing.ā The congressmen refer to this study as being a bit dated, as it was published in May of 2015. It reviews the published prices of nine DMTs over a 20-year period, ending in 2013, and shows that prices for those older, first-generation DMTs increased at an annual rate that was five to seven times higher than general prescription drug inflation. In their news release, the lawmakers also referred to a report from the National Multiple Sclerosis Society that included a chart of drug price increases since the approval date for each drug.
August 21, 2017 Columns by Debi Wilson Humorous Moments Created by Life There are some pretty humorous things that can happen to me because I have multiple sclerosis (MS). Believe me, I understand living with MS and how difficult it can be to find the humor in anything about MS most days! But then, other times I can see the comical,…
August 21, 2017 Columns by Ed Tobias MS News That Caught My Eye This Week: Older Therapies and Cancer, New Gut Study, Ocrevus in Canada Older Immunosuppressants May Increase MS Patientsā Cancer Risk, Study Reports We’re talking about some pretty harsh immunosuppressant drugs here: azathioprine, mitoxantrone, and possibly cyclophosphamide. Unlike newer drugs, targeted to specific cells, these knocked out an entire spectrum of immune cells when they were administered. If you’ve used…
August 17, 2017 Columns by Ed Tobias Is Medical Marijuana Right for My MS? The state where I live has legalized medical marijuana (MMJ) and it’s getting ready to open state-licensed marijuana dispensaries. So, I’ve been thinking about using MMJ to treat some of my MS symptoms. How can MMJ help MS patients? A 2012 study by researchers at the University…
August 17, 2017 Columns by Jennifer (Jenn) Powell Invisible No More My parents taught me at an early age not to judge others based on appearance. My mother would gently admonish me if I would stare or point at someone in a wheelchair or who had an obvious physical malady. While these basic manners…
August 17, 2017 Columns by Laura Kolaczkowski Digging Deeper for a Cure I stood at the front door of my house and could only shake my head as I watched the backhoe digging a deep trench in my yard. A sewer line malfunction created a mess in my basement and it turned out to be a broken clay pipe in…
August 15, 2017 Columns by Teresa Wright-Johnson My Tired Is Not Your Tired Fatigue. Most people with chronic illness ā especially MS ā experience this. My energy levels vary from one day to the next. I am tired of being tired (pun intended). There are days when getting out of bed is challenging, and times when I literally have to force…
August 15, 2017 Columns by Ed Tobias An MS Study You Might Want to Join I was surprised to see that a study of a potential MS drug labeled MD1003 is still accepting participants. It’s a study that I’d love to take part in, if only I was a few years younger. MD1003 is a high dose of biotin, a form of…
August 14, 2017 Columns by Debi Wilson How I Overcome My Challenges to Stay Active Believe me, I enjoy being active. As I’m sitting in a chair or a wheelchair, it may not appear that way, but I do. I have multiple sclerosis, and the fatigue and difficulty of moving can make it extremely laborious to be active. The thought of going on…
August 14, 2017 Columns by Ed Tobias MS News That Caught My Eye This Week: Study Volunteers Wanted, MS and the Flu, Iron and Pediatric MS, Botox University of California at San Francisco Recruiting MS Patients for Gut Bacteria Study Last year, a Harvard study reported significant differences between bacteria that MS patients have in their bellies and that found inĀ those who don’t have MS. If that bacteria is treated, those MS-related changes might…
August 11, 2017 Columns by Jamie Hughes Cover to Cover, Books of All Kinds Can Lift Your Life In “On Writing: A Memoir of the Craft,” as excellent a book about wordcraft as has ever been set to paper, Stephen King says, “Books are a uniquely portable magic.” Iām inclined to agree. After all, no matter where you are, you have company if thereās a book at…
August 11, 2017 Columns by John Connor Walk This Way As I write, I’m pain-free. This is important, but not for the obvious reason. I’m pain-free and can walk āĀ or at least stumble ā about as best as I’ve been able to manage of late. It’s not much, but I can be involved in family life and get…
August 11, 2017 Columns by Ed Tobias Are Insurance Companies Forcing You to Switch from Generics to Brand-Name Drugs? Insurance companies want people to use generics, rather than the more expensive brand-name drugs, right? Maybe not. Because, at least in some cases, they’re doing just the opposite. Some patients are being forced to use brand-name drugs even when those drugs have generic equivalents. Not surprisingly, that means…
August 10, 2017 Columns by Jennifer (Jenn) Powell Tired of Fatigue Many of us with multiple sclerosis have heard the saying, āI go to bed wired and wake up tired.ā This is quite accurate, as fatigue is one of the most prevalent aspects of living with MS. So often I hear from well-meaning individuals who,…
August 10, 2017 Columns by Laura Kolaczkowski Faces of MS Advocacy Do you ever stop to wonder about the people who write these great columns for Multiple Sclerosis News Today? I have the honor of knowing several of them via telephone conversations and even occasional in-person meetings. You can tell by looking at our bios that we are a…