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Are You Stronger Than MS?

May 27 is World MS Day, and the hashtag #strongerthanMS will be used to raise awareness around the globe. The theme of this year’s celebration centers around access. Why access? Because each person with multiple sclerosis is affected differently but we all want to feel that we are allowed to do the things we choose and are [...]

Fingers and Feet, Don’t Fail Me Now

Two years ago this month we published the first entry in our MS Symptom Thesaurus. In the ensuing 24 months we’ve posted nearly as many entries on topics from pain to drop foot, and on to depression, “cog fog,” and so many more. The concept is for you to leave your synonyms, adjectives, adverbs, descriptions, [...]

Vision Quest: Have You Had Your Eyes Checked Lately?

Don’t love wearing glasses? I doubt that anyone does. That said, I do love my glasses. Beyond allowing me to see better, the frames I have are the only fashionable accessory statement I make. Silly as it may sound, it’s likely that it’s because I really like these spectacles that I haven’t gone in for [...]

Feel Bad? Maybe Things Are Better Than You Think

In January 2014, we changed the way we asked our monthly question: How’s your MS today?  That’s when we started using the Life With Multiple Sclerosis Self-Evaluation Scale (LWM3S). It’s a simple 1-10 scale. 1= The best I’ve felt my symptoms since diagnosis with MS 10= The worst I’ve felt my symptoms since diagnosis with [...]

Can’t Afford Your Prescriptions? Here’s How to Get Help

Earlier this week I wrote about the price of multiple sclerosis drugs in the United States. That piece was on the heels of a report published in Neurology that told of the out-of-control rise in the costs of disease-modifying therapies for MS. The blog was shared hundreds of times by our readers on social media [...]

MS Drugs Are Just Too Damned Expensive

Your in-box probably lit up yesterday like mine did with the New York Times editorial about runaway drug prices. While we’ve all been talking about the price of disease-modifying drugs for MS, a new paper in Neurology speaks directly to the issue. The Times editorial called out multiple sclerosis drugs as “of particular concern” when it comes to [...]

Hello, Glatopa: The First Generic MS Drug

Just over two years ago I wrote a blog about the first wide-scale testing of a generic MS drug. Online response to the news that someone had finally moved into the territory of follow-on biologics was positive. The thought that we might be able to get the same results from the drugs we take at a [...]

MS Counterpane: A New Site to Meet Multiple Sclerosis Where You Are

Many of you will know of Kate Milliken, but you may not realize it. She has hosted several very informative “MS Learn Online” videos that have been produced for the National MS Society. Like us, Kate also lives with multiple sclerosis. Earlier this month I had an opportunity to spend about an hour on the [...]

A Week Without an MS Fall

It’s been a week today since my last fall! I guess I didn’t realize how often I’ve been falling of late, but it’s been an MS fall-free seven days. Caryn returned home from a business trip last evening, and I was able to report that relative success to her. It was a busy week as [...]

Caregiver? Care Partner? Who Really Cares?

Caretakers are in charge of the grounds of cemeteries, buildings, grounds, etc. They take care of something. Caregivers, on the other hand, give care and are referred to in British English as “carers.” If  caretakers take care and caregivers give care, do carers simply care? Now throw in the very American derivations of care partner or [...]

A Day Without (Thinking About) Multiple Sclerosis

Monday, I was supposed to write a blog and send it in. That obviously did not happen. We don’t own a car here in Kerry. We do rent a car now and again when needed, and this week is one of those times. So, I, piled the happy dogs into the hired transport, took Caryn [...]

The Sliding Scale of MS Symptoms

For a long time now, we’ve taken one post per month to ask the question; “How’s your MS today?” Last month seemed to be a bit mental for me and I simply forgot to ask. Using our LWM3S formula whereby 1=the best your symptoms have been since diagnosis and 10= the worst since diagnosis, how is [...]

Who Is Your MS Hero?

Some of you may remember the video I posted last year of Caryn and myself doing the adventure swim Jump for MS to raise awareness of multiple sclerosis. The hearty soul who led us on that trip is Ripley Davenport, and he too has MS. We all have our role models and personal heroes in the MS [...]

When Art and MS Come Together

With the sixth annual, and now internationa, MS Art Show taking place in Seattle in a couple of months, I have been thinking about art and multiple sclerosis. The old philosophical debate “What is art?” came to mind. Great musical performers like cellist Jacqueline du Pré, country star Clay Walker, and Australian singer Chrissy Amphlett, as well as painters [...]

My MS Is Not Your MS, or Is It?

The exact experience each of us has with multiple sclerosis is as different as anything I can imagine. At the same time, many of us have very similar experiences. How unusual, when you think about it, that we can experience every moment of the day differently with MS, but not a blog post goes by [...]

Guinness Cured My Multiple Sclerosis — Sort Of

Guinness cured my MS. Not really, but I did feel better than I had in years during the winter of 2005-2006. That’s the period I write about in Chef Interrupted when I was living in a small town on the Irish coast… and I drank a fair good bit of the black stuff. I had [...]

How to Live a Passionate Life With MS

I was honored to participate in a Google Hangout with Meredith Vieira last December. We talked during that event (which you can watch here) about managing life with MS and the support systems some of us find helpful. It was great fun and, I thought, an informative half hour. (You can watch that hangout here.) Now, I’ve [...]

Living in the Mindfield That Is MS

After a whirlwind two weeks in the Pacific Northwest to launch my new book, Chef Interrupted, I am back home with my pack and trying to adjust to the time zone and enjoying a slower pace. While in Seattle, I had the opportunity to spend some time with a film crew from the local NBC [...]

At Multiple Sclerosis Poker Night, All Bets Are Off

There have been a lot of bright, shiny moments in my life. For a good long time after my diagnosis with multiple sclerosis it seemed that those sparkles of life were no longer in my cards, but they did come back. Last night I experienced great warmth and pride when I visited Poker Night, the National [...]

Multiple Sclerosis and the Expectation Game

“Why don’t they understand?!” I hear many of us say over and over when it comes to family and friends and their expectations of us and our abilities. Some close to us expect that we can and will do all of the wonderful things we used to, with not a step lost because of MS. [...]

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