International Differences in MS Care
Happy 2014 to all of the members of the Life With MS Blog community. 2013 was in interesting year for many reasons and we hope that the New Year brings nothing but good things for you.
As we left the old year behind, the US FDA denied approval for the MS drug marketed as Lemtrada™ (alemtuzumab) for relapsing MS on December 30. This same drug was approved by the European Commission that oversees drug approvals for much of the continent just a few months prior.
The US regulators want to see more proof (in the form of more trial data) of safety and efficacy.
As I experience a difference in MS care in my new home versus ...
Source: Life with MS - January 2, 2014 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis clinical trials drug trial MS Around the Globe MS treatment multiple sclerosis clinical trials Source Type: blogs
A Year-End Check-In: How’s Your MS Today?
It’s been a few days since I was able to post a blog. A big storm has knocked out power, phones and internet in much of my area of the world. Our power has been pretty consistent relative to others we know but our Internet… not so much.
So, what should have been asked last week I’ll ask today. How’s your MS today?
We’ve asked this question every month for an awful lot of years now and each month your responses are helpful to many – not just you. People learn from our experiences, they find descriptions in your words and they feel not so alone when it comes to living with MS.
For those who do check in ab...
Source: Life with MS - December 31, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis How's your MS Today? Source Type: blogs
Marie Fleming, MS Activist, Has Died
There is never an easy time to say goodbye to a friend. The holidays seem like a particularly cruel time when you think of the family left behind. This past week, Marie Fleming, a long-time crusader for the rights of people with MS (and other incurable conditions) passed away the way she wanted.
Marie had lived with MS for a long time – some twenty seven years – and found her condition ever-deteriorating. In 2012, when MS took even more of her abilities, Marie embarked on a long and uphill battle with the Irish court system to fight for her right to die the way she wanted.
Ireland’s laws on the “sanctity of l...
Source: Life with MS - December 23, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis Death from MS MS and family MS Ireland Source Type: blogs
Multiple Sclerosis Code Words
“Burlington” was a word my classmates in culinary school used to fit into a sentence when we wanted to draw attention to something. We all knew to have a look around if we heard the seemingly innocent word dropped into conversation.
For a while, Caryn and I used “Burlington” as an MS code word.
Why would anyone need a code word and how might it be used in reference to MS? Have you ever not wanted to bring up the words “multiple sclerosis”? Or, even speak the letters “MS? That’s why.
Sometimes you don’t want others to know that you have this stupid disease. “Burlington” didn’t mean “MS”, it...
Source: Life with MS - December 19, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis Holidays Living with MS Source Type: blogs
MS Holiday Gift Lists
‘Tis the gift giving season. It can be tough enough figuring out what to get that special someone let alone all of the other people on our gift list. When we’ve finally figured out the last puppet, tie and book someone invariable asks the question, “What would you like?” and we freeze.
Many of us have scaled back our lifestyles and downsized our belongings to fit our “new normal”. One thing I’ve learned over the years, however, is that if you don’t offer up something you’d really like or need that you’re bound to end up with something that you neither need nor like all that much.
Never fear, there...
Source: Life with MS - December 13, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis MS & the holidays MS and family MS Gifts Source Type: blogs
A Year Without
A year ago this week, Caryn and I unplugged the television in our home (a fully-furnished holiday home until we moved into it) to move it across the room during a bit of rearranging. There was no electrical outlet or satellite hook-up, so we never plugged it back in. Last month we moved it into a closet in the spare bedroom.
We don’t miss it.
After the holidays last year, we dropped my visiting parents off at the airport, picked up a few large items we knew we needed and dropped off our rental car. Until the local bike shop opened in March so that we could get our bicycles put back together we simply walked and use...
Source: Life with MS - December 11, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis Ireland Living with MS Source Type: blogs
An MS Bucket List
Jack Nicholson and Morgan Freeman spent the better part of a feature film living out the dreams of a dying man in the movie “The Bucket List”. Skydiving, visiting the great sites of the world, dinning on the world’s best foods, and laughing until brought to tears are things the characters want to do before the “kick the bucket”.
Now, MS isn’t usually a fatal condition but, quite frankly, life is. And, if we’re still on the frankly train, many of us have already seen losses in our abilities which make some of the things we’d like to do more difficult if not impossible. Are there things you hope to do ...
Source: Life with MS - December 9, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis Living with MS Source Type: blogs
Waking to a World Without Mandela
Nelson Mandela
“Hero” is a word which has been cheapened in our world for several decades. The man who bought that word back from Hollywood and tabloids – with the compounded interest it deserves – was Nelson Mandela.
My time zone woke to the news this morning that our world has lost that hero.
Mandela was imprisoned before I was born, and the quiet, conservative enclave where I was raised wasn’t a place where such things were discussed. Still, Mandela’s plight leaked into my burgeoning political consciousness via word of student protests against apartheid at local universities.
By the time the news in my corne...
Source: Life with MS - December 6, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis community Source Type: blogs
Walking the Dog, Making Tea: What Routines Tell You About MS Progression
Our dog, Sadie, likes a good walk every day and I know it’s good for me as well. I also try to get out on my bicycle every day (as it’s our main mode of transport, it’s easier than you think). Simply sitting down to write a blog or the sequence of making a cup of tea are things which I do often enough to get used to how I do them.
Over the past few days, or maybe even a couple of weeks now, I have noted how much more difficult these things are to accomplish.
Trying to shuffle a deck of playing cards for a hand or two of gin rummy with Caryn or trying to add up the score. Measuring ingredients out for a soda bre...
Source: Life with MS - December 4, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis Living with MS MS fatigue MS symptoms Source Type: blogs
The Little Dangers of Living with MS
I nicked myself shaving this morning. Alright, alright; it was afternoon by the time my legs were able to carry me into a shower.
Sharp objects, uneven flooring, dark corridors, driving, walking… sometimes it just seems sitting can be dangerous with MS. The simple act of shaving with shaky hands can leave one looking like Scarface (or, I suppose “Scar-legs”, ladies).
I drop things. I break things. I stumble, trip and fall over things… or sometimes I fall over nothing at all.
Watching a friend’s newborn toddle over the Thanksgiving weekend brought my own version of “toddling” to mind. The thing is, s...
Source: Life with MS - December 2, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis Living with MS MS dangers Source Type: blogs
Our New MS Opinion Blog for MS Ireland
The Life with MS blog community continues grown, change, evolve and become an amazing place in the past – good grief! Is it really nearly 8 years?! The care and attention you pay to many of our posts and all the people who come asking questions in the comments section has been a joy to watch over that time.
Because of the attention you give these pages, we have been afforded access to people who have answers to our questions, researchers looking into the causes and potential cures for multiple sclerosis as well as being asked (more than you could imagine) to post some new information from a drug company or medical de...
Source: Life with MS - November 29, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis awareness community Living with MS MS Blog HIstory ms community Source Type: blogs
Chronic Illness Has Made Me a Cranberry
In the coming days and weeks, many a holiday groaning table with be laden in a manner I refer to as “Something old, something new, something borrowed and something cranberry.” Tradition meets newfangled. and the nicked, plagiarized or lent hold court with some form of the once-a-year fruit sauce.
Mind you, I love cranberries. They are not only a lovely counterpoint to the richness of the rest of our buttered/creamed/casseroled/gratinated feast. They are also a bright and resilient little berry.
Cranberries grow in soil unfriendly to much else; their fields are flooded and they are beaten off their scrubby littl...
Source: Life with MS - November 27, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis community Everyday Health life with MS Living with MS Source Type: blogs
Sometimes You’ve Just Got to Do It Anyway
The time now is nearly 5:00pm in my part of the world.
Normally, I try to get my blogs written early in the day so that my mind is fresh and I can get a point across. I’ve been trying to gather my thoughts all day and it’s just not working. I get an idea and it seems like a lot of research. I get another one and I seem to forget it on the way to my laptop. The next idea is 100% crap.
Some days are like that.
Sometimes I have to assure myself that it’s not that I’m lazy; I really do have something wrong with my brain. I’m not sure which is easier to accept – that I might be “lazy” or that my brain ...
Source: Life with MS - November 25, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis Living with MS MS Bad Days Source Type: blogs
MS Symptom Thesaurus: Drop Foot
As we continue with our monthly MS Symptom Thesaurus posts, we are delving into less ‘universal’ symptoms of MS. Unlike fatigue, or MS pain and even ‘cog-fog’, we are now into symptoms that as many (if not more) fear will happen than are actually experiencing. While some may think that this is just an exercise in scaring people who may not ever experience such symptoms, I believe that understanding what the symptoms might feel like can help us to identify and to explain.
Today we discuss Peroneal nerve damage; known to most us as MS Drop Foot.
I have experienced drop foot to the extent that I’m on my second A...
Source: Life with MS - November 22, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis MS symptoms Multiple Sclerosis Thesaurus Source Type: blogs
November, 2013; How’s Your MS Today?
The days grow shorter and colder, the nights longer and darker. With a gentle frost or a howling gale we are reminded – in the Northern Hemisphere, at least – that winter is nigh. As Dave Goulder’s song, The January Man, puts it “The poor November man sees fire and wind and mist and rain and winter air.”
Sometimes living with MS feels like that; “fire and wind and mist and rain and winter air” and, and, and…sometimes all on the same day.
We check in with our selves once each month to see which, if any, of the stormy symptoms we may be encountering. We ask ourselves if we’re better than, worse th...
Source: Life with MS - November 20, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis How's your MS Today? Source Type: blogs
