It’s February and We Want to Know: How’s Your MS Today?
Time flies when you’re having fun… or slogging through another winter with MS. It’s already Late February so I’d better ask our monthly question, “How’s your MS today?”
This is an open forum to check-in with yourself and with others. We’ve solicited requests for blog topics and mined these pages for ideas. Many people use this space as a personal MS journal and check back six to twelve months for their thoughts before heading into doctor’s appointments.
Like most things about this blog, it’s all about you.
How is my MS today? Well, I’d have to say that things have held pretty fast this past month. C...
Source: Life with MS - February 20, 2013 Category: Other Conditions Authors: admin Tags: How's your MS today Source Type: blogs
Multiple Sclerosis Euphemisms
As many a child learns a euphemistic name for their “private parts,” several - if not all - of us have used little nicknames for parts or our life with MS.
I was listening to a short interview on the radio with a woman who has written a book about her experience after her husband’s death. It was her use and explanation of several euphemisms around dying, death and grieving. As grief and the grieving of loss is part of our regular MS exercise routine, I thought we’d give it a go here on the Life With MS Blog.
We use non-scientific names and tags for events for the same reason we teach children alternatives for thei...
Source: Life with MS - February 15, 2013 Category: Other Conditions Authors: admin Tags: MS and Your Feelings MS community multiple sclerosis slang Source Type: blogs
The Way You Treat Your MS is Crazy, and That’s Okay
It is not putting too fine a point on it to say that, while MS has distinct traces and patterns, each person’s multiple sclerosis is unique unto them. The way MS touches you, the manner in which you respond (or don’t) to medications, your mental outlook on life, the list could go on… All of these are yours and yours alone.
Were someone else to look at the way you “work” your disease, they might find it 180° from the way they take care of themselves. You might read someone’s comment here and bite your tongue (or don’t) at the way they have decided to live their life with this disease. The point is, it is you...
Source: Life with MS - February 13, 2013 Category: Other Conditions Authors: admin Tags: MS and Your Feelings MS treatment emotional health Source Type: blogs
MS-Induced Frugality
None of us will likely argue the fact that MS is a damned expensive disease. We are all affected financially by MS in one way or another. I thought we’d have a chat about reasons and ways that we can all be a bit more frugal.
One big one is how MS may have switched our career paths - as my friend Mike put it - from “thrive” to “survive”. We may not be able to work any longer, may not be able to work as/hard/as much/as long, we may not go for the promotion (or may simply be looked over for it) as we deal with the progression of multiple sclerosis in the workplace.
Even if we’re still gainfully employed in our c...
Source: Life with MS - February 11, 2013 Category: Other Conditions Authors: admin Tags: MS money matters MS pills money and ms multiple sclerosis and treatment Source Type: blogs
MS, Inc.
Far earlier than the mid-winter moon set behind the hills of west Kerry this morning, the morning after news broke that Biogen Idec purchased Tysabri from its partner and inventor of the drug, Elan for a whopping $3.25 Billion (that’s $3,250,000,000), I lay awake trying to fathom the vastness of the news. I am no mathematician on my best days and ever since my attack in August of 2011 I still have an aversion to numbers. Still, the thoughts rumbled in my head.
Even at current wholesale prices and using the figures posted by the company itself (that over 99,000 people worldwide have “taken” Tysabri not “are on Tysa...
Source: Life with MS - February 8, 2013 Category: Other Conditions Authors: admin Tags: MS Politics MS pills Tysabri ms and businesses multiple sclerosis drugs Source Type: blogs
Living Life With the Breaks On: Multiple Sclerosis on the Seat of a Bike
In a scene from one of my favorite Irish films, The Commitments – the story of a young soul band forming in 1980’s Dublin – three of the band members are trying to come up with a name for their group.
“How about ‘And, And, And’!” says one of the lads.
I mention that because it seems lie something of a lifestyle choice here in Ireland. Everyone seems to be/do more than one thing. A grocer-and-member of the county council, a publican-and-lifeboat captain, the farmer-and-builder for example. Last week we took our bicycles to be reassembled by the local publican-and-bike repairman. As we don’t yet have a car ...
Source: Life with MS - February 6, 2013 Category: Other Conditions Authors: admin Tags: exercise bikes and ms walking and ms Source Type: blogs
Hardly a Sound as a Second Oral MS Treatment Enters the Market
When the first MS Pill come onto the market there were front news stories, doctor’s offices were flooded with questions and the manufacturer’s stock price did a healthy spike. This past fall, the FDA approved (and the market will soon see) a second oral medication to help fight multiple sclerosis… but not many are talking about it.
We wondered why.
First, a bit about the drug. The name of the compound in the drug is called Teriflunomide. It is an active metabolite of another drug, Leflunomide, which many people with rheumatoid arthritis have been taking for over a decade. The marketing name of this drug is called ...
Source: Life with MS - February 4, 2013 Category: Other Conditions Authors: admin Tags: MS pills MS treatment oral ms treatment teriflunomide Source Type: blogs
Multiple Sclerosis and Meditation
“You don’t have to be a Buddha-on-the-mountain-top-vegan-hippy-nutball”… Quite possibly the best line I’ve ever been given when interviewing a person with MS. That answer was given by my pal, Suzanne Stephens, in an article we wrote about yoga and MS. It could, however, be used about a number of alternative therapies for our disease.
One such alternative can be part of a yoga practice: meditation.
At its simplest, meditation can be a simple awareness of our breath. At its most complex, meditation can be part of a religious experience. The simple act of a morning inventory can be a meditation.
In a recent...
Source: Life with MS - February 1, 2013 Category: Other Conditions Authors: admin Tags: MS treatment meditation yoga Source Type: blogs
‘At Least it’s Only MS, Not Cancer’ REALLY?!?!
You know, we all have something… and there ain’t none of us getting out of here alive. We all cope with our multiple sclerosis in our own way and no one (particularly one of “our own”) should judge us for how we do that coping.
That said; a recent revelation has made all of that “it could be worse” stuff seem a tick beyond trite and almost offensive.
In the past week I’ve found out that two people who were, at different times in my life, close to me for different reasons have been diagnosed with life-threatening cancers. They are, coincidentally, the same form of cancer and both are strong men who have taken...
Source: Life with MS - January 30, 2013 Category: Other Conditions Authors: admin Tags: MS lifestyle Pain and MS life threatening diseases multiple sclerosis and cancer Source Type: blogs
Multiple Sclerosis Hands
I was going to title this post “MS Spills” but I realize that when multiple sclerosis affects the hands it’s more than just spills which can be an issue.
A hot cup of coffee in my MS hands should be considered a weapon of mass destruction! Between wonky gait, tremors in my arms, when I’m trying to hold something, or if I’ve lost feeling all together, point A to point B seems to be a few laps around the alphabet. That my left side is weaker than my right — thus my right hand holds my cane or my forearm crutch — lends an air of obstacle course to many of my household excursions.
I can sometimes have g...
Source: Life with MS - January 28, 2013 Category: Other Conditions Authors: admin Tags: Diagnosis MS MS and Your Feelings MS balance MS blog MS diagnosis MS management MS symptoms Multiple Sclerosis spasticity living with multiple sclerosis ms and movement ms and stress multiple sclerosis and balace multiple scler Source Type: blogs
Multiple Sclerosis and a Second Wind
The last time I wrote a blog which included a musical reference I was on some pretty serious pain killers after my hip replacement and I got some serious (and quite deserved) flak from my sister for its sappiness. Well, we finally found the box with our music CDs in it today and it was nice to listen to a few tunes as we got on with our day’s work.
Billy Joel was on the playlist and his song “You’re Only Human (Second Wind)” caught me up short.
I started thinking about a “second wind” in relation to living with MS. In fact, an answer from a recent interview with Mike Jensen, a photographer living with multiple...
Source: Life with MS - January 25, 2013 Category: Other Conditions Authors: admin Tags: MS and fatigue living with multiple sclerosis Source Type: blogs
Life With MS Can Have ‘Beautiful Limitations’
Please allow me to begin this post by saying that I find nothing about living with multiple sclerosis to be a “good thing”, a “blessing” in any way or something for which I am “thankful”. MS did not “give” me anything positive, I am not a “better person” because of this disease and I would give back and relearn every lesson I have gained ten times over if I could matriculate in another of life’s hard knocks courses.
I say those things - repeat them really, as I’ve said them over and over again - because what I’m about to write about might sound a little Pollyanna to those who do not know me as an...
Source: Life with MS - January 22, 2013 Category: Other Conditions Authors: admin Tags: MS Politics mobility limitations President Obama Source Type: blogs
‘Parsimony’: My New Way Of Living With Multiple Sclerosis
The many symptoms, faces and expressions of multiple sclerosis are not unlike a word with several definitions. When scholar William Ockham wrote “Pluralitas non est ponenda sine necessitate” (sorry, the inner geek who was his Latin Club’s president comes out every now and then… “Plurality should not be posited without necessity”), which later became known as the Law of Parsimony, it wasn’t to describe tightfisted stinginess.
Rather, the Principle oft called “Ockham’s Razor” was intended to give precedence to simplicity when weighing probable reasoning. In other words; all things being equal, the simple...
Source: Life with MS - January 17, 2013 Category: Other Conditions Authors: admin Tags: MS and fatigue MS management energy and ms Source Type: blogs
A Post-Holidays Check In: How’s Your MS Today?
January is officially two weeks old, the holiday season is behind us and a long winter lay ahead. It’s time for our monthly check in.
How’s your MS today?
The months after the end-of-year holidays can be a difficult time for people living with multiple sclerosis. I once read (I have no idea where or when) that more MS relapses happen the first six weeks or so into the new year than any other time of the calendar. That is, of course, if you take out the first three months after a woman gives birth (but that’s a post of a different color).
As you check in with yourself and our community with this month’s checkup, I...
Source: Life with MS - January 14, 2013 Category: Other Conditions Authors: admin Tags: How's your MS today New Year ms relapses Source Type: blogs
Is Routine Important to your MS?
It’s been a lot of years since the Boatswain’s Mate of the Watch came to my bunk at 3:00am every morning to roust me so that I could shower and make my way to the bridge in order to stand my Navigator’s Watch. The meticulous clockwork by which a ship at sea operates dates back to the great wooden fighting ships of lore and continues on today.
There is something to be said for being formed at sea – one knows exactly what is to be expected at exactly what time of the day, week or month. I believe that such routine has helped me in my life after the US Coast Guard and, maybe even a little bit with my life with mu...
Source: Life with MS - January 11, 2013 Category: Other Conditions Authors: admin Tags: MS balance MS lifestyle MS sleep multiple sclerosis routine Source Type: blogs
