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It’s Time for an Accurate Count of Americans Living With MS

As many of our long-time readers know, I am an advocate for neurological research. Unfortunately, the research community has long been separated into chauvinistic sectors, with information gripped like a thief’s purse until publication. In the past decade, however, there have been incredible breakthroughs in the realm of data sharing across disciplines. We may now […]

What Do You Look for in a Health Blog?

Everyday Health, the host of our Life With Multiple Sclerosis blog community, is cohosting an international gathering of healthcare bloggers in a couple of months. I will be attending and giving a workshop at this event, but more on that later. For now, as a part of the preparation for the event, we are looking […]

MS Research: Taking Part for Hope and for Science

Clinical trials for drug therapies carry, by their nature, a certain amount of risk. As a subject in a number of clinical trials and research studies (not all of which were drug trials), and as a current patient advocate on a large National Institutes of Health (NIH)-funded study, I understand this and have grown to accept […]

Even Small Window Panes Let in the Light

One night over the winter, a small group of overwatered lads tossed a rock through an old, thick, and very large shop window in our little town. This plate of glass was wider than the span of my outstretched arms. It was a shame to see it replaced with a more modern, three-pane window. As […]

‘Dryuary’: Taking a Month Off the Sauce

In late 2000, I experienced a bit of a health scare. This was a few months before I would be diagnosed with multiple sclerosis (MS), but it had nothing to do with that eventuality. As one test led to another, and to more doctors scratching their heads, I was advised to make a few dietary [...]

The Chronic Cabin Fever of Living With MS

We are just days away from the beginning of spring — at least according to the Celtic calendar. The wild primroses are beginning to bloom, my gladiolas have begun to stick their tender little heads above the soil, and the garlic I planted on Halloween is introducing itself to the slowly lengthening days. That said, winter [...]

Pucker Up to Kiss MS Goodbye

I’m not the only person who has ever wished that multiple sclerosis (MS) would just “kiss off.” In fact, that might be the mildest language I’ve heard that has to do with MS and kissing. But as you can see from the photograph above, the MS community is offering a different kind of kiss: We’re [...]

Stem Cells and Cancer Drugs and CCSVI, Oh My!

Annette Funicello died nearly three years ago due to complications of multiple sclerosis. Why, then, did the Internet seem to explode with news of her death in the past couple of weeks? The same goes for the “new discovery” by an Italian doctor — a headline I’ve been seeing on questionable health sites. These articles speak of [...]

Weather and MS: Are Hot, Cold, or Changing Temperatures Worse for You?

Winter has finally set its teeth into the arse of the northern Hemisphere, while the Southern half of the globe is sweltering in triple-digit summer heat. Seems like a good time for our monthly check-in to see how you’re all doing. Each month we ask you to rate your multiple sclerosis (MS) based on the Life [...]

Faulty Proprioception: How MS Can Throw You Off Balance

We stood on a hillside near the edge of the sea, Sadie and I. She was tired from bounding about in the thick tufts of grasses and heather that would one day — one eon, more likely — become peat turf. The sun was low in the sky, and the only sounds were the breaking [...]

NPR Show Features ‘Life With Multiple Sclerosis’

Well now, 2016 has started off with a bang for your Life With Multiple Sclerosis blogger! I awoke New Year’s Day to an inbox full of greetings and one particular email from the office of travel guru Rick Steves. The producers of Mr Steves’s radio program were getting in touch to let me know that [...]

What Will 2016 Bring for Multiple Sclerosis?

At the dawn of a new year, I’ve been asked to jot down a few thoughts about what may be ahead in 2016 for those of us living with multiple sclerosis (MS). My first reaction to this request was to think of Johnny Carson’s Carnac the Magnificent character holding an unopened envelope to his bedazzled [...]

With Multiple Sclerosis, I Miss the Office Holiday Party

Ho, Ho, Ho! Where’s the V.O.? The gifts are wrapped. The tinsel is strung. The Brussels sprouts are creamed, and the ugly sweater collected from the cleaner. Let the holiday festivities commence! But something is always missing for me at this time of year. Even if I’ve only ever technically worked in an office for [...]

Mental Fatigue Sets In as Another Year With MS Winds Down

For nearly as long as we’ve been writing the Life With Multiple Sclerosis blog, we’ve afforded you an opportunity to check in with yourself and with others in our community as to how you’d rate your multiple sclerosis (MS) symptoms. In the past few years, we’ve suggested you rate them according to the Life With Multiple [...]

Weathering the Storms of Multiple Sclerosis

I’ve just unpacked my suitcase for the last time this year. It’s been a very busy travel year, and it feels great to be home with no imminent plans to spend another night away. As I catch up with former neighbors and friends back in Seattle (my hometown for many years), I’m hearing of disastrous [...]

I May Appear Well-Adjusted to MS, But I’m Not!

I dragged myself out of my warm bed and into a dark, cold morning today to make my way to Dublin for a meeting with Ireland’s best MS bloggers. Last night I made sure all of my preparations for the trip were complete so I could sleep for as long as possible. These things take [...]

Inclusion: It Matters for People With Disabilities

Today, December 3, is the International Day of Persons With Disabilities. The theme for this year’s observance is “Inclusion Matters.” Last year in our Life With Multiple Sclerosis blog, we discussed social isolation, a topic that resonated with many of our readers. We all know the importance of inclusion in as many aspects of “normal life” as possible. Inclusion [...]

When One MS Symptom Leads to Another

The symptoms of multiple sclerosis are vast and varied. Just about anything controlled by the central nervous system (and that’s just about everything) can be affected. I’m finding that sometimes it’s not the direct symptoms of MS that cause me problems; it’s what I call the “knock-on” effects that can get to me. We’ve talked about some of [...]

#YouDontLookSick: The Special Bonds of Those Who Are

A few years after I was diagnosed with multiple sclerosis (MS), I found myself in a medical marijuana dispensary in a state where it was legal. Doctor’s prescription in hand, I was checked in through one security door and then another. By the time I was let through the third, nondescript door into the dispensary [...]

My Travels With MS: What’s Accessible, What’s Not?

By the end of November, I’ll have spent two-thirds of my nights away from home this month, including in 10 different beds and a couple of airplanes. Luckily for me, I’ve been so bloody tired that I’ve slept well enough in spite of this. The levels of accessibility accommodation that I’ve been afforded (all without actual request) [...]

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