Columns

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…

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…

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…

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…

“The very beating of your heart has meaning and purpose.” 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…

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 “shadow pricing.” 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.

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,…

Older Immunosuppressants May Increase MS Patients’ 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…

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…

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…

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…

Fatigue. Most people with chronic illness – especially MS — 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…

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…

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…

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 in those who don’t have MS. If that bacteria is treated, those MS-related changes might…

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.” I’m inclined to agree. After all, no matter where you are, you have company if there’s a book at…

As I write, I’m pain-free. This is important, but not for the obvious reason. I’m pain-free and can walk — or at least stumble — 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…

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…

Many of us with multiple sclerosis have heard the saying, “I go to bed wired and wake up tired.” 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,…

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…

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 about air pollution and MS. In addition to MS, I also have asthma. Therefore, the health…

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, I’d removed the top of the bottle to scrape one final dollop from it onto the sandwich…

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),…

Why me? Why us? What have I done? How much loss can I endure? We’ve all been here. This was one of my weeks. The unexpected death of my nephew hurled me into this episodic gloom. I asked “What else is going to happen? Is life trying to…

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…

Resistance Training Can Slow MS Patients’ Brain Shrinkage, Clinical Trial Indicates Over the years, studies have shown the benefits of various types of exercise in improving MS symptoms. But here, Alice Melão reports about a small…

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 now justifiable hypochondria, is a very dark nexus. It started with a UTI that has been persistent for nigh…

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…

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…

I recently spent time at the annual meeting of the Drug Information Association (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…