Look at Your Shoes: They Can Tell Your MS Story
Who needs timed walking assessments or Hollywood-inspired motion-sensor tests? If I want to know how my gait is effected by MS, all I have to do is look at my shoes.
I bought a pair of shoes nearly three years ago and I love them – perhaps too much. I wear them most days for most of the day.
These shoes fit me perfectly. They are sturdy enough to fit the orthotic inserts I require, yet comfortable enough to wear all day. While I used to wear slippers in the house, those arch supports require shoes, and these dearies are just the thing. They shine up if I need them to look decent in a casual situation and can just...
Source: Life with MS - January 23, 2015 Category: Other Conditions Authors: Trevis Gleason Tags: multiple sclerosis Living with MS MS gait issues MS symptoms Source Type: blogs
What Happens When Governments Say MS Drugs Are Too Pricey?
I’m stuck on this one.
In recent days, the UK’s National Institute for Clinical Excellence (NICE) has decided not to widen use of beta-interferon for MS, and the Irish National Centre for Pharmaeconomics (NCPE) has refused to pay for the oral MS drug Tecfidera.
Interesting as well (and I’m not sure exactly how to think of this either) is that the US Supreme Court just made an MS drug ruling too, on Copaxone. This one seems to go the opposite way from the two European decisions.
My first thought is that every person living with multiple sclerosis must be given access to the drugs they and their medical team thi...
Source: Life with MS - January 21, 2015 Category: Other Conditions Authors: Trevis Gleason Tags: multiple sclerosis MS Around the Globe MS in the news MS Money Matters MS treatment Source Type: blogs
How’s Your MS Today? Post-Flu, I’m Feeling Better
Time flies when you have a chronic illness!
That doesn’t seem right, but I just realized that this month marks the year eight of us asking the monthly question, “How’s your MS today?” How can it be? Then I realized that we are soon to mark the end of our ninth year of the Life with MS blog and that this post is number 1,100! The mind is completely boggled.
In this time, you have used our monthly check-in to ask yourself – and perhaps ask those close to you, who may see things that we do not – how things are going. In recent years we’ve added the Life with Multiple Sclerosis Symptom Scale (LWM3S) whe...
Source: Life with MS - January 16, 2015 Category: Other Conditions Authors: Trevis Gleason Tags: multiple sclerosis How's your MS Today? Source Type: blogs
The Kindnesses We Can Do for Ourselves
We’ve just finished the “it’s better to give than receive” season. Many of us have made New Year’s resolutions that have us living some part of life with long teeth. And we’re only weeks away from the liturgical season — Lent — where many will give up something dear to them for six weeks of penance and self-denial.
So I’m going to turn the tables and talk about giving something to ourselves.
I’ve said before that MS is a thief. It takes more from me than I am willing to give, but it usually doesn’t matter whether I’m willing or not. For that reason, I’ve decided (well, Caryn an...
Source: Life with MS - January 14, 2015 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis life with MS Living with MS MS and family Source Type: blogs
Wabi-Sabi: A Key to Life With Multiple Sclerosis?
To say that I’ve had a bit of time on my hands this past two weeks would be putting it lightly. Just about my only commute since before the New Year has been between my sickbed and the armchair in front of the fire. I’ve had a fair amount of time but energy for little more than reading and poking about the interweb.
An old friend posted something about non-American cultural concepts on Facebook. These aren’t just things that don’t translate well with words because, as I found in my research, they seem to be threads left out of the tapestry of American life.
Coined in 15th century Japan as a counter-response to the...
Source: Life with MS - January 12, 2015 Category: Other Conditions Authors: Trevis Gleason Tags: multiple sclerosis life with MS Living with MS Source Type: blogs
How to Use Pre-MS Lessons to Tackle MS Challenges
All of us had a life before we were diagnosed with multiple sclerosis. Some of us were younger or older – with more or less experience – but we all had a life and we had all attained some level of proficiency at living. We had also all gained certain skills and attained some ‘tools’ with which to manage our world.
I think it’s important to go back to that old tool box from time to time, to see what old skills might help us get through an MS day.
The thought came to mind as I was (and am still) trying to battle back from my flu. I remembered the breathing device they gave me after my hip replacement surgery. It w...
Source: Life with MS - January 9, 2015 Category: Other Conditions Authors: Trevis Gleason Tags: multiple sclerosis Living with MS Source Type: blogs
MS and Fear: Maybe I’m Not as Strong as I Thought
Well, we’re a full week into 2015 and I’m just getting over a bug that sat me down on the 29th of December.
I woke that morning with a “crinkly” feeling in my chest as if I were breathing around a crumple of aluminum foil in my lungs. Fever, night sweats (so profound I thought I may have been incontinent in the night), chills, pain, cough, and near delirium have followed for over a week. So bad was it that on the morning of the second day I had visions of “the end.”
For much of that second day, I lay in a feverish fog. As we know, sustained high body core temperature can bring on pseudo-exacerba...
Source: Life with MS - January 7, 2015 Category: Other Conditions Authors: Trevis Gleason Tags: multiple sclerosis MS pain MS symptoms Source Type: blogs
A Toast to MS Advances in 2015
I am always stuck on what to offer in my last blog of the year. I’m not the kind of guy to candy-coat our plight in life. We have a progressive disease with no cure. I’m also not one to bemoan our lot. We have proven to each other time and time again our resilience and resolve.
I prefer to look forward during this time of the year. Still, however, we can’t help but look back at what MS has taken from us in the past 12 months. I have lost some ability and I have lost friends to this thief we all know too well. I have seen us all work very hard to maintain (and sometimes regain). We have had successes and we have had f...
Source: Life with MS - December 29, 2014 Category: Other Conditions Authors: Trevis Gleason Tags: multiple sclerosis community life with MS Living with MS MS and family ms community Source Type: blogs
The Ice Bucket Challenge
Well, it finally happened. This week my wife, Caryn, squealed with delight as she watched our mutual friend’s video calling me out in the ALS Ice Bucket Challenge.
I was standing in a warm shower on a cold and rainy morning thinking of my first cup of hot coffee and a fresh-from-the-dryer cozy towel when she told me.
I must admit that I figured it was only a matter of time before someone on social media figured it was a good idea to challenge me.
This morning I suited up, wrote the check, and took my ice like a big boy.
Some people in the MS community have reached out and said we should start something like this for M...
Source: Life with MS - August 29, 2014 Category: Other Conditions Authors: Trevis Gleason Tags: multiple sclerosis ALS ms research Source Type: blogs
A New Season, a New Normal? How’s Your MS Today?
They say here in our little town at the edge of the world that “the summer is out of it after the [local horse] races.” Well, it was a great race weekend a fortnight back and I can attest that the summer is, indeed, out of it.
Cooler, wetter days and some nearly cold nights, coupled with a back garden littered with newly dropped sycamore leaves every morning, tell me that the seasons are changing. The wind now comes from the north more days, the mornings are darker, and the evenings shorter.
The sunsets that I track across the westerly-facing window in front of my desk have long since started heading left again...
Source: Life with MS - August 27, 2014 Category: Other Conditions Authors: Trevis Gleason Tags: multiple sclerosis back to school How's your MS Today? MS and seasonal changes MS-related depression new normal Source Type: blogs
My ‘MS Crush’: An Organization Helping the First ‘Young Generation of MS’
Let me start out by saying that I’m beginning to have what my wife would call an “MS crush” on the lads over at Shift.MS. She has a “foodie crush” on a couple of local chefs who strum her palate. I guess it’s alright if I feel the same about an organization doing really good work for our cause.
I’d previously written about some of the short films called GALLOP when it first popped into my MS inbox. Since then, Shift.MS has put out a few more short films that we’ve mentioned. This week, they’ve done it again.
We first met “Gen” in the film Circle of Truth as she struggled with the concept of outing he...
Source: Life with MS - August 25, 2014 Category: Other Conditions Authors: Trevis Gleason Tags: multiple sclerosis online community Shift.MS Social Media social network Young people & MS Source Type: blogs
How War Harms the Treatment of People With MS
It was with solemn reverence that many of us listened to the BBC broadcast from Westminster in remembrance of the centenary of the beginning of “the Great War.” We now know that said conflict was a bloody prequel to the mid-century conflagration that would rename it World War I.
My own country entered into the war many years on and with far fewer losses than those of other combatant nations.
No matter the “winner” of a war, all experience losses. These are tallied in lives and land, in fortunes and in countless intangibles. There are, of course, gains in nation-on-nation conflict — one of which must surely be the...
Source: Life with MS - August 20, 2014 Category: Other Conditions Authors: Trevis Gleason Tags: multiple sclerosis advances in MS research MS Cure MS Money Matters MS treatment war Source Type: blogs
The MS Wild Card: A Middle-Aged Look at Life Without a Cure
There was a time in my life when birthdays were a good time to look back and mark accomplishments. There was a time when they were a good time to look forward to what might lie ahead. In general, I now look at birthdays as simply a good time to have a good time.
When a family member only a brace of years behind mentioned that I was now middle-aged, however, I awoke to today’s blog topic. What if they don’t find a cure before my life comes to an end?
When pressed in an interview of me that our readers conducted in 2009, I admitted that I didn’t think there would be a cure for MS in the next 25 years. (To be fair, I an...
Source: Life with MS - August 18, 2014 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis concept of a cure Living with MS middle-aged MS Cure Source Type: blogs
After the Fall: Getting Up From an MS Tumble
I believe there are two kinds of people: those who divide the world into two kinds of people and those who don’t.
I always told culinary students, however, that there were two kinds of people in professional kitchens; those who have been cut and those who have yet to be cut. Likewise it could be said that people with MS have either already fallen or are yet to fall – but we know that might be too general a statement.
So many times in the history of the Life With MS Blog we’ve given attention to the figurative “getting up after a fall.” Today I think we should focus on safely getting back up after the ...
Source: Life with MS - August 15, 2014 Category: Other Conditions Authors: Trevis Gleason Tags: multiple sclerosis Living with MS MS fatigue MS pain MS Safety Source Type: blogs
The ‘What If’ Game: Worries Waiting for MS Test Results
Today, there are nearly 60,000 recent high school graduates in Ireland (they call them “leavers” here) who are heading in to get the results of their “Leaving Cert” exams. This is the set of tests given to set young adults off on their academic and/or career paths.
Big stress around a lot of homes and cottages these past few weeks as everyone awaits their scores.
It brought to mind the stress and fears that accompany an MS diagnosis.
Many of us experience symptoms that go misdiagnosed, ignored, explained away, or even unfelt for years before we head in for the final sentence.
Much could be gained in those times by ...
Source: Life with MS - August 13, 2014 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis ms community ms test results Newly diagnosed Symptom management Source Type: blogs
