Columns

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…

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.” Iā€™m inclined to agree. After all, no matter where you are, you have company if thereā€™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 ā€”Ā 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…

Tired of Fatigue

Many of us with multiple sclerosis have heard the saying, ā€œI 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,…

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…

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…

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, Iā€™d removed the top of the bottle to scrape one final dollop from it onto the sandwich…

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),…

Lessons Learned from Loss: A Tribute

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

‘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…

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…

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…

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…

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…

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…

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…

Sharpen Your Sense of Joy

Believe it or not, summer is nearing its end, and a new school year is upon us. I donā€™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 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…

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…

Choosing to Infuse Myself with Optimism

Living with an incurable, progressive disease can be physically and emotionally exhausting. Iā€™ve always been a girl who thrives on proof and assurances, and there seem to be little of either where MS is concerned. Itā€™s taken me quite a while to settle into the awkward instability that is ambiguity,…

Got Questions? iConquerMS Seeks Answers

If youā€™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…

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…