The MS Phantom Itch Sure Feels Real to Me
There are multiple sclerosis (MS) symptoms that people can see and that we can explain. There are also invisible symptoms that can be harder to explain — except, of course, when those invisible symptoms become painfully visible.
Then there are phantom symptoms, where we “feel” the sensation of such things as bugs crawling or water dripping on our skin, when in fact there’s nothing there.
I’ve recently had a go with a phantom sensation that had a real effect.
Pruritis, Otherwise Known as ‘Itching’
Some members of our Life with MS blog community have mentioned pruritis — also known as the MS Itch — as a...
Source: Life with MS - July 12, 2017 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis life with MS Living with MS MS pain Symptom management symptoms trevis gleason Source Type: blogs
High-Res Images of the Brain ’s White Matter Could Help Researchers Understand MS
I’ve always had an image in my head of what the so-called white matter of the brain — the part most affected by multiple sclerosis (MS) — looks like. Boy, was I wrong!
We’ve all seen the sliced images of our brains produced by those noisy MRI machines. They look somewhat like X-rays but show the soft tissue of the body rather than just the bones.
Those of us with multiple sclerosis have also — unfortunately — seen lesions on our white matter in the MRI images and perhaps even brain atrophy, or “black holes.”
I suppose that we’ve all also imagined what that stuff really looks like, and scientists at C...
Source: Life with MS - July 5, 2017 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis advances in MS research MS Around the Globe MS doctors MS in the news trevis gleason Source Type: blogs
Invisible MS Symptoms Are Real, Whether or Not Other People Believe Us
I had an opportunity to talk about invisible MS symptoms this week.
While recording a two-part radio program (I’ll put up a link when it airs) in support of the Irish edition of my memoir, Chef Interrupted, earlier this week, the host of the show asked quite a few questions about multiple sclerosis (MS). He observed that my obvious symptoms seemed much less severe than those of someone else he knows who has MS.
It wasn’t the “but you look so good” or “you don’t look sick” sort of comments, but I knew where your man was going. So I brought up the analogy of the MS iceberg and told him that he was only see...
Source: Life with MS - June 30, 2017 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis awareness Living with MS MS and family Symptom management symptoms trevis gleason Source Type: blogs
How My Life With MS Resembles the Flight of a Songbird
I don’t have a problem falling with my MS; I fall, I get back up, no problem … except, of course, when the fall is the problem.
But I try to focus on the time in between the literal and figurative multiple sclerosis (MS) falls in my life.
Cherishing My Time Between Falls
A slow stretch of the legs down the laneway with my pack — my two Wheaten Terriers, Sadie and Maggie — today reminded me of that time between falls.
Yesterday was one of those soft, damp days that Ireland is known for. Thick, gray mist hung in the air all the day, and the long light of near midsummer through the thick clouds made for a constant ...
Source: Life with MS - June 27, 2017 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis Everyday Health life with MS Living with MS MS Fitness MS symptoms Symptom management trevis gleason Source Type: blogs
Hyperosmia: My MS Makes Smells Smell … a Lot
Hyperosmia refers to an abnormally heightened sense of smell or abnormal sensitivity to odors. On the website PatientsLikeMe, where some 500,000 people have shared their personal experiences of living with a chronic condition, only about 120 of them report hyperosmia.
Many of those reporting it have multiple sclerosis (MS), while others have ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease) or migraine.
Leave it to me to be in such a small minority.
Far more people with MS report anosmia — a lack of or reduction in the sense of smell — and research seems to lend credence to these reports.
Artificial Sc...
Source: Life with MS - June 22, 2017 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis awareness Everyday Health MS symptoms trevis gleason Source Type: blogs
Top Tips for Staying Cool During a Late Spring Hot Spell
We’re in the throes of a late spring scorcher here in Ireland, and we’re clearly not the only ones: I’ve been hearing from people with multiple sclerosis (MS) from all over the world who are dealing with high temperatures. From Europe to South Africa, and Australia to the United States, people with MS have been sending me their best advice on coping with the heat.
Why is heat such an issue for those of us with MS?
Multiple sclerosis is a condition affecting the central nervous system — the body’s “electronic system” — and electrons don’t function efficiently when heated (which is why your electronics h...
Source: Life with MS - June 20, 2017 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis Living with MS MS Around the Globe MS fatigue Symptom management trevis gleason Source Type: blogs
How ’ s My MS This Month? Hint: I Have a Cane in Every Room
Looking at the number of canes, walking sticks, and forearm crutches stashed around the house, I’d have to guess that I’ve slipped this month.
Normally, my large collection of walking aids is kept in a corner by the front door. Depending on the weather outside and the way multiple sclerosis (MS) is affecting me “inside” that day, I pick one to use as I head out the door.
When I’m in the house, I usually use the same cane or do a bit of wall and furniture walking to make my way around — though I’ve now added a walking stick in the kitchen that comes in handy when I drop things.
Lately, though, I’ve notic...
Source: Life with MS - June 16, 2017 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis How's your MS Today? Living with MS MS fatigue MS symptoms trevis gleason Source Type: blogs
How ’s My MS This Month? Hint: I Have a Cane in Every Room
Looking at the number of canes, walking sticks, and forearm crutches stashed around the house, I’d have to guess that I’ve slipped this month.
Normally, my large collection of walking aids is kept in a corner by the front door. Depending on the weather outside and the way multiple sclerosis (MS) is affecting me “inside” that day, I pick one to use as I head out the door.
When I’m in the house, I usually use the same cane or do a bit of wall and furniture walking to make my way around — though I’ve now added a walking stick in the kitchen that comes in handy when I drop things.
Lately, though, I’ve notic...
Source: Life with MS - June 16, 2017 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis How's your MS Today? Living with MS MS fatigue MS symptoms trevis gleason Source Type: blogs
MS and Vertigo: When the Earth Moves, but Not in a Good Way
This past fortnight I’ve been hit with some episodes of vertigo that made me think of the earthquakes I experienced when living in Alaska and on the American West Coast. It’s as if the earth beneath me is rolling like a wave, or I’m standing on an underinflated air mattress.
The sensation only lasts for a few moments to a few minutes, but when it happens, I have to wonder if I’m going to be able to stay upright, even if I’m using a forearm crutch.
While I don’t feel nauseated when these episodes hit, I can see how someone might. For me, it’s like the world is moving in a way I’m not used to, and I am tryin...
Source: Life with MS - June 14, 2017 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis Living with MS MS Blog HIstory multiple sclerosis clinical trials Multiple Sclerosis Thesaurus trevis gleason Source Type: blogs
How a Garden Tool Became My Latest Assistive Device
Before I was diagnosed with multiple sclerosis (MS), I used to do a bit of gardening. Perhaps it was the memory of the massive vegetable patch my father kept in our back garden, or maybe it was my years at sea that gave me an appreciation for having my hands in the soil of the earth. Likely it was a combination of the two, along with the joy of growing my own food.
Whatever the reason, I’ve liked gardening for a good while and find it a wonderful way to enjoy a fine day. And now that I have MS, gardening is nearly the perfect hobby for me, for a number of reasons:
The best hours to work in the garden are before and aft...
Source: Life with MS - June 8, 2017 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis Living with MS MS fall MS fatigue MS Fitness trevis gleason Source Type: blogs
Chef Trevis Gleason ’s No. 1 ‘Life With MS’ Hack
Most of our long-time readers, and even many who may have recently found us, know that I formerly pursued my professional passions in the culinary field. I was classically trained and worked for many years as a chef. Multiple sclerosis (MS) took away my ability to do the things a chef must do: stand for long periods, work in hot environments, slice and chop ingredients, and attend to the budgeting, costing, and scheduling of the kitchen.
I like to think that I have put many of the managerial skills I gained in running multiple kitchen facilities to use in living with MS. However, my “chefing” skills are oft asked abo...
Source: Life with MS - June 6, 2017 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis Everyday Health life with MS Living with MS trevis gleason Source Type: blogs
On World MS Day, Multiple Sclerosis Had Me Facedown in My Soup
Yesterday was World MS Day, which this year had the theme #LifewithMS. I’d hoped to spend the day celebrating what I call “the living part” of our life with multiple sclerosis (MS).
However, the week leading up to the big day had been rather busy. One day a large group of friends who were on a tour of Ireland came for a dinner party, and the next day renowned musicians Hanz Araki and Owen Marshall arrived and stayed with us for a few days.
On top of that, there were behind-the-scenes preparations to be done for MS Ireland’s World MS Day event announcing the report “Quality of Life of people living wi...
Source: Life with MS - June 1, 2017 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis awareness Living with MS MS fatigue trevis gleason world MS day Source Type: blogs
World MS Day 2017 Is All About #LifewithMS
Wednesday, May 31, is World MS Day this year. Events are planned — or have already happened — worldwide, and people living with multiple sclerosis (MS) are encouraged to share their life tips (the little things we’ve learned that help us get on with living with our disease) in videos and texts.
When sharing your tips on social media, be sure to use the hashtag #LifewithMS.
Here in Ireland, we’ve seen a lovely uptick in the national media taking note of the day by featuring people living with MS. Today my friend Aoife was featured in an article in the Irish Examiner, and I was given space in yesterday’s I...
Source: Life with MS - May 30, 2017 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis awareness MS Around the Globe MS in the news trevis gleason world MS day Source Type: blogs
Doctor, It Hurts When I Do This: My Mystery MS Pain
May is flying by. We’re already into week 21 of the year, the days are long, and there’s even a bit of warmth in the sunlight. Better make sure we get our monthly “How’s your MS?” check-in posted.
For all of the stuff going on in my life right now, I’m surprised at how relatively well I’m feeling. We launched the European version of Chef Interrupted, my memoir, to great press reviews, and it’s selling well.
We’ve had house guests coming out our ears, and a new publishing project is in its final stages, with a release date set for September 29 (more to come on that).
You’d think that my difficulties...
Source: Life with MS - May 23, 2017 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis Everyday Health How's your MS Today? life with MS MS symptoms trevis gleason Source Type: blogs
Bipartisan Bill a Step Toward Controlling Prescription Drug Price Increases
Few could be happy with the condition of the political system in America’s capital at the moment. Scandals and counter-scandals, finger-pointing, navel-gazing, and partial truths abound. It would be easy to think that none of the People’s work was actually getting done.
I had a little bit of faith restored when I read of a new, bipartisan bill that was introduced to curb runaway prescription drug prices.
Law Would Bring Transparency to Drug Price Hikes
According to reports, Senator Tammy Baldwin (D-WI, above right), Senator John McCain (R-AZ, above center), and U.S. Representative Jan Schakowsky (D-IL, above left) are ...
Source: Life with MS - May 18, 2017 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis awareness How's your MS Today? life with MS ms community MS in the news MS Money Matters MS treatment trevis gleason Source Type: blogs
