With MS, an Empty Inbox Leaves Me Feeling Unneeded
Even though I’ve lived with the diagnosis of multiple sclerosis (MS) for more than 16 years, there are things I experience now and again that are identical to things that happened in those first few months after MS came into my life.
One of the most devastating experiences I had relative to MS in the beginning was the sense of a lack of connection to the world around me.
From Hyperconnected to Unconnected
For a number of years, I’d been working at a job that had me flying from city to city day after day, week after week, often for weeks on end without going home between stops. I had important contacts to maintain in 1...
Source: Life with MS - May 16, 2017 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis community life with MS Living with MS Social Media trevis gleason Source Type: blogs
Patient Advocacy Groups Line Up Against Trumpcare
“There is no substitute for fundamental, unequivocal protections for people with pre-existing conditions.” So reads a statement by eight leading patient groups in response to the U.S. House of Representatives vote on the American Health Care Act (AHCA or “Trumpcare”).
The strongly worded letter was posted to legislators by the American Cancer Society Cancer Action Network, American Heart Association, American Lung Association, Cystic Fibrosis Foundation, March of Dimes, National Organization for Rare Disorders, National Multiple Sclerosis Society, and WomenHeart: The National Coalition for Women with Heart Diseas...
Source: Life with MS - May 11, 2017 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis MS and family ms community MS in the news MS Money Matters trevis gleason Source Type: blogs
Prescription Drug Cost Conversation About to Get Louder
Last month I wrote a blog post about MS prescription drug patient assistance programs and how I find them to be a Band-Aid — and “a dirty, infected Band-Aid at that.”
Well, that post got a bit of attention in the social media realm, and it got the attention of the traditional media as well, including USA Today, which has a story on drug maker-funded coupons and patient assistance programs in today’s online edition. (Scroll down to see a mention of yours truly.)
More Patients and Professionals Speaking Up
As you’ll see from the USA Today article, I’m not the only one speaking up about this topic.
At a recent c...
Source: Life with MS - May 3, 2017 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis awareness MS in the news trevis gleason Source Type: blogs
MS ‘Miracle’ Emails: Why I’m Over Them
We all get them: emails promoting the next book, the next diet, the new drug, or the next underdog story of the person who “won his battle” with multiple sclerosis (MS).
I suspect that because I’ve been writing about life with multiple sclerosis for as long as I have, I get a few more of these than you do, but we all get them.
And if we get them, we know that they’ll eventually make their way into social media, and we’ll soon be hearing about the latest thing from well-meaning friends and family.
In the past month, I’ve received several of these emails, and I’m really over them.
The ‘Water, Exercise, Diet, ...
Source: Life with MS - April 27, 2017 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis books about MS multiple sclerosis cure Newly diagnosed trevis gleason Source Type: blogs
MS and Fitness: Reach Your Goals, Respect Your Limits
As many of you may be aware, my book, “Chef Interrupted,” has just recently been published in Europe after a successful first publication in the United States. We’ve been so very fortunate in the press coverage of the launch and are looking forward to our release party as part of Féile na Bealtaine in a week’s time.
I’m also happy to announce that friend and fellow MS blogger David Lyons, who writes the MS Fitness Challenge blog for Everyday Health, also has a new book out for people living with multiple sclerosis (MS).
“Everyday Health and Fitness With Multiple Sclerosis: Achieve Your Peak Physical W...
Source: Life with MS - April 25, 2017 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis awareness community MS Blog HIstory MS Book Club MS Fitness Social Media Source Type: blogs
Age at MS Diagnosis Varies by Latitude
Which came first: better education of medical practitioners in a particular area of the world to look for symptoms of multiple sclerosis (MS) earlier, or the actual earlier onset of MS in that part of the world?
Well, if the findings published in December 2016 in the Journal of Neurology, Neurosurgery & Psychiatry are correct, it appears that it may be the latter.
Using data on 22,162 people with MS from the MSBase registry, researchers determined that people living in higher latitudes — from 50° to 56° north and south — were diagnosed with multiple sclerosis a full two years earlier than similar people living...
Source: Life with MS - April 18, 2017 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis awareness MS and family MS Around the Globe MS fatigue Newly diagnosed research trevis gleason Source Type: blogs
Oh, the Things You ’ll See Over an MS Lifetime
I once wrote a toast for a dear couple who were to celebrate their 50th wedding anniversary at the same island hotel where they had honeymooned — well, where they’d spent a weekend after their wedding. As I researched their life together, I realized that some pretty amazing stuff had taken place during the time they’d spent as a couple.
They’d seen the rise and fall of the Third Reich, the Iron Curtain, and the Berlin Wall. Their married life encompassed 11 presidents and five popes, and spanned from the age of propeller planes through to manned space travel and the sending of a man-made object beyond our solar s...
Source: Life with MS - April 13, 2017 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis Everyday Health life with MS Living with MS MS and family MS doctors MS in the news trevis gleason Source Type: blogs
When Did the Online MS Conversation Become an Echo Chamber?
If there is one thing to be learned from last year’s global political tumbles, it’s that an ever-growing portion of the populace is getting its information from an ever-shrinking number of sources.
Back when I had long flights to fill and a laptop with a short battery life, I’d read three and four newspapers every day. I didn’t read the whole paper, but I’d read national, regional, and local takes (often different local takes every day) on events in the day’s news. I’d also have the opportunity to listen to local radio in a number of media markets every week, as well as tune in to late-night news before turni...
Source: Life with MS - April 11, 2017 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis community Everyday Health life with MS Living with MS ms community MS doctors MS in the news Social Media trevis gleason Source Type: blogs
Multiple Sclerosis: Not a Win-or-Lose Game
I’ve often said that living with multiple sclerosis (MS) isn’t a death sentence — it’s a life sentence.
What I mean by that is that (in most cases) we quite literally don’t die from multiple sclerosis, we die with MS. We are sentenced to a life of living with this disease, and that means trying to find a way over, under, around, or through the mountains that are dropped in our paths.
Different Games, Different Ranking Systems
Maybe it’s because of two sporting events that converged this weekend, but I’m beginning to think of this “living with MS” thing another way as well. The NCAA basketball tourna...
Source: Life with MS - April 4, 2017 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis Source Type: blogs
With MS, Hope Is the One Thing I Couldn ’t Live Without
We’re a fiercely independent lot, those of us with multiple sclerosis (MS). We don’t like to ask for help, we shun assistive devices for as long as possible, and we help raise funds and awareness around the world. We employ varied methods to get through our days with MS.
We also have to give up a lot — but there are some things we couldn’t live without.
I was asked recently what I, as a person who has multiple sclerosis, couldn’t live without. My answer: hope.
Other people with MS have answered this question differently, citing family, a spouse, love, faith, online community, personal flexibility, and even a whee...
Source: Life with MS - March 31, 2017 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis community life with MS Living with MS MS and family Social Media Source Type: blogs
Which of Your MS Symptoms Are Difficult to Describe?
The more I get out there and talk about my multiple sclerosis (MS) during this book tour, the more I’m finding that I have my own way of describing the disease itself and my symptoms of MS. I suppose 12 years of writing the Life with Multiple Sclerosis blog — yes, we had a birthday on March 14 — have given me plenty of opportunity to hone my description skills.
Still, every once in a while I come across an MS symptom that I’ve not had to relate to someone, and I have to really think about how to couch my experience in a way that someone wholly unfamiliar with this disease might understand.
We started the MS Symp...
Source: Life with MS - March 29, 2017 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis books about MS Living with MS MS symptoms Multiple Sclerosis Thesaurus trevis gleason Source Type: blogs
After a Busy ‘Off-Season,’ It’s Time to Ask: How’s Your MS Today?
“The Season” here in our little corner of Ireland refers to the tourist season. It used to be that when the kids went back to school in September, things died until the May Bank Holiday weekend, then slowed again until school ended in late June.
Now, international tourists keep the tour bus lines running well into November. Christmas and the New Year bring thousands to our town, and by St. Paddy’s Day, in March, all the shops and restaurants are open and in full swing.
My “off season” was taken up with the final throes of a new publishing project that we’ll talk about in the autumn. Right now, I’ve just launc...
Source: Life with MS - March 24, 2017 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis How's your MS Today? Living with MS MS in the news MS symptoms trevis gleason Source Type: blogs
Who Really Benefits From Pharma Patient Assistance Programs?
Just about any time we mention the price of medications for multiple sclerosis (MS), as we did in a post last week, many people comment that they rely on so-called patient assistance programs from drug manufacturers to help pay for their meds.
While each pharma-sponsored patient assistance program differs in its specifics, the basic way such programs work is to help cover some (or most, or sometimes even all) of the patient’s copayment (as determined by their health insurance plan) for the company’s drug.
MS drug prices being what they are, it’s no wonder that most people have to rely on some form of financial assis...
Source: Life with MS - March 22, 2017 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis awareness MS treatment Multiple Sclerosis Thesaurus trevis gleason Source Type: blogs
What It Costs to Prevent an MS Relapse: New Report Reveals Some Shockers
I’m often asked where I get much of the information I turn into our Life With Multiple Sclerosis blogs. I use a lot of the same patient advocacy organizations that you do. I also subscribe to some medical journals, and I get alerts from professional sites used by doctors and journalists.
Last week I got an alert from one of those sites telling me about a new report on the cost-benefit ratio of multiple sclerosis (MS) drugs, produced by the Institute for Clinical and Economic Review (ICER) and dated March 6, 2017.
In the report (It’s 253 pages, so make the coffee strong), the Institute states that most people living...
Source: Life with MS - March 16, 2017 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis MS in the news research treatment Source Type: blogs
Shingles Rears Its Ugly Head During MS Awareness Week
Sure, wasn’t it MS Awareness Week in America last week? Sure, didn’t we begin the week the way I have over the past several years: by blogging about something about which people with multiple sclerosis (MS) might not even be aware? Sure, didn’t multiple sclerosis have a little help from another friend last week?
From a Feeling of Foreboding …
I knew something was wrong — the way only we can know something is wrong — on Wednesday, but I couldn’t quite put a finger on it. There was a cognitive lag, an unusual mild headache, and a general physical foreboding of something to come. I went to bed early and hop...
Source: Life with MS - March 14, 2017 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis awareness Everyday Health life with MS Living with MS MS Blog HIstory MS Sleep MS symptoms trevis gleason Source Type: blogs
