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…
Columns
My Tired Is Not Your Tired
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…
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 — 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…
Tired of Fatigue
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,…
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…
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…
MS News That Caught My Eye This Week: Resistance Training, Tysabri Report, Cognigram, and Depression
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…
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…
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…
(Editor’s note: Tamara Sellman continues her occasional series on the MS alphabet with the second of two columns about terms starting with the letter “G.” Read more “G” terms here.) Mastering an understanding of multiple sclerosis means you need to mind your Ps…
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…
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…
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…
In case you missed 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…
Sharpen Your Sense of Joy
Believe it or not, summer is nearing its end, and a new school year is upon us. I don’t 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…
Going Solo… Sort Of
In my youth, I hitchhiked the breadth of North America ― 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…
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…
Living with an incurable, progressive disease can be physically and emotionally exhausting. I’ve always been a girl who thrives on proof and assurances, and there seem to be little of either where MS is concerned. It’s taken me quite a while to settle into the awkward instability that is ambiguity,…
If you’ve 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…