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Speed Bumps Along the Multiple Sclerosis Road

Living with multiple sclerosis and attempting to look ahead in life can sometimes feel like staring at an unfamiliar, winding road, mostly obscured by a foul mist of dragon’s breath. Often, therefore, we choose to look into the rearview mirror instead to try to gauge our life with MS thus far. At diagnosis, we try [...]

MS and Heat Sensitivity: I Thought I Knew What to Do

It’s always nice to come home after being away for a few weeks.  It was particularly pleasant to return home to an 85°F temperature change. On a recent leg of my book release tour, the hottest day while I was in South Carolina was 103°F  with humidity closer than a hoarder’s cupboard. By the end of nearly two [...]

Appointment Amnesia: Why You Forget Everything Your Doctor Says

In a continuation of the ongoing posts we call the MS Symptom Thesaurus, which we first stumbled upon tongue in cheek, I thought we’d address something that isn’t exclusive to multiple sclerosis. Generally, this “symptom” gets better as we progress from that diagnosing appointment. The problem is that as MS progresses, our cognitive function can [...]

How’s Your MS Today? I’m Beating the Heat in Florida

Time for that monthly check-in: How’s your MS today? Me, I landed in the Tampa Bay area of Florida this week, and WOW! I had forgotten what heat and humidity can do to a body. We’ve talked about what heat can do to people with MS before. I’ve also written about coping options to keep cool. Well, this [...]

Unsolicited MS Advice? Thanks, But No Thanks

As a consultant in the food world I always adhered to the adage, “Free advice is taken at face value.” That is to say that people respect and respond to an “opinion” much more when they’re paying top dollar (or Euro) for the advice. Those of us living with a chronic illness need to consider the source [...]

The Knowing Nod That Says ‘I’ve Been There Myself’

Yesterday I had the opportunity to speak with two groups of people about my former career as a chef, my book, and living with multiple sclerosis. In both chats there were people who knew MS very well and some who did not really know about our disease.  Some have MS, some were family members, and [...]

Is a Cane That Looks Cool Too Much to Ask?

In reading the program plan for this year’s Consortium of Multiple Sclerosis (CMSC) annual meeting, I was overwhelmed by the amount of really interesting research  Because it came on the heels of the European MS Platform (EMSP) meeting in Warsaw and just before I head to America and Canada in support of my book, Chef [...]

What Does MS Take From Us? About Seven Years

My name is Trevis Gleason and I live with multiple sclerosis. How many times haven’t I started a speech with that line?  Hell, it’s an important factor in my book, Chef Interrupted, I live with my disease. I consider myself a healthy person living with an incurable disease, and I try to get on with [...]

MS: A Difficult Disease Made Even More Difficult

For many of us, living with multiple sclerosis is a very personal endeavor.  Even those closest to us may not relate to just how trying some of the simplest daily tasks can be. That is one of the best parts of our Life with MS Blog community: We don’t have to explain. We all get [...]

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 [...]

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