Shopping With Multiple Sclerosis
Between weather and schedules and a bit of MS thrown in, it’s been a while since I’ve been out to the shops. Today the skies are brighter and the rain is to hold, I feel more rested than I have in quite some time and though my legs are doing the pins & needles prickle… the cupboards are nearly bare.
It’s time to make it into the town for some shopping.
With American Thanksgiving less than a fortnight away, the holiday season about to burst open and just the weekly shopping needs, I thought it might be a good time to talk about shopping and MS. It’s something most of us need to do, that many of us have dif...
Source: Life with MS - November 18, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis community Living with MS MS Money Matters Source Type: blogs
A World of Difference: Emma Rogan
In the years since I left my boyhood home I have lived in three countries, ten states and in about twenty two residences. That’s a lot of moving, but it’s also been an opportunity to meet all kinds of people. It has been one of the most interesting and rewarding parts of my life thus far.
In meeting so many people from so many different places some stand out for various reasons. Some stand out for reasons of good, some for bad and some stand out in my memory because of how my life has been changed because of them. Emma Rogan is one of the few who is highlighted in my life for all three reasons.
Today is the las...
Source: Life with MS - November 15, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis advocacy awareness community life with MS Living with MS Social Media Source Type: blogs
Multiple Sclerosis from Inside the Orchestra
A couple of weeks ago I was ambushed by an old schoolmate and hijacked back to 1983. It was a particular anniversary of an event in our lives which changed and forever shaped us.
On a cold, October night in Michigan, USA a tiny little band of 70-odd crushed ensembles two and nearly three times its size. Our little group was – and to this day, is – the smallest high school band to win the state’s championship Governor’s Trophy and our record high score stood for over twenty years (and, I believe, only then fell because of a scoring system change).
The video of our winning performance was posted online and, for m...
Source: Life with MS - November 13, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis life with MS Living with MS MS Blog HIstory ms community Source Type: blogs
Veterans and Multiple Sclerosis
“At the eleventh hour on the eleventh day of the eleventh year…” the simple elegance of the phrasing brings one back to the time when the end of a war was marked by an Armistice. Back to a time so naive as to name what we now know as a prequel “The war to end all wars”. But today, call it Veteran’s Day or Armistice Day or Remembrance Day, we stop to honor those who have served their countries in time of war and in time of peace.
Unfortunately, many of the ranks of our veterans are also members of our ranks; people living with multiple sclerosis.
There have been some studies showing veterans at higher risk f...
Source: Life with MS - November 11, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis awareness research Veterans and MS Source Type: blogs
The Two O’clock Crash
In the late 1990’s, I was pursuing a jet-set career. Waking at 3:00 on Monday mornings, visiting five cities in three (or more) time zones and, by the end of it, maybe making it home for three weekends per month were the callings of my job. I was at the top of my game, professionally, though my personal life was suffering for the time away.
One of the things that got me though each of those days was an increasing number of espresso shots in my 2:00 o’clock mocha.
By that time of the day I would be about to fall down for the fatigue. I wrote it off to the 240,000 plus miles I was flying annually and the hours I kept w...
Source: Life with MS - November 8, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis MS fatigue MS symptoms Source Type: blogs
MS Symptom Thesaurus: Depression
Several months back, and at the request of one of our long-time followers, we began a monthly feature called the MS Symptom Thesaurus. In this blog, I introduce a symptom of the disease multiple sclerosis and we all chime in to give our descriptors of the symptom.
This exercise has been helpful to many newly diagnosed people finding their way through the MS maze, to healthcare professionals who are trying to figure out what we’re on about and to many of us who are searching for the words to explain our symptoms to family and friends.
Today we’ll open up our comments to words that try to describe, explain and define M...
Source: Life with MS - November 6, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis MS symptoms Multiple Sclerosis Thesaurus Source Type: blogs
With MS, Child-Proof Equals Trevis-Proof
The day that I realized that you can request non-child-proof (if that’s a word) caps for prescription bottles was a big day for me. I can’t remember exactly where I learned this face – it may have been a television advert for a local pharmacy – but I was elated.
How many times did my uncooperative fingers and hands fumble with opening the very medications that would have helped me to open their bottles? Now, I’m beginning to notice newfangled security caps on all kinds of household products around our place.
Maybe it has to do with new brands we are using in our new home; perhaps it has to do with new coordin...
Source: Life with MS - November 4, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis life with MS Living with MS MS around the house Source Type: blogs
Author JK Rowling Contributes to the MS Cause
The question of how much – if anything – any of us living with multiple sclerosis is obligated to do for the cause is one of personal willingness. When famous people get MS, many of us change our tune and simply expect that they will give of their time, money and talent for the cause. I’ve always said that such a gift would be great but it’s none of my business.
Now we take someone who is one – albeit a small ‘one’ – degree of separation from the disease, I’d say that any expectation of requirement or obligation is just chucked out the window.
That’s why I think that the new Anne Rowling Regener...
Source: Life with MS - November 1, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis awareness Living with MS MS and family MS Cure MS treatment multiple sclerosis clinical trials research Source Type: blogs
Frenchman With MS Falls From the Top of the World
Marc Kopp is from France and he was diagnosed with primary progressive multiple sclerosis in 2001 – the same year I was diagnosed with MS. Monsieur Kopp fell last week. He fell out of an aircraft, from 32,800 feet (nearly 10,000 meters) over Mount Everest…and he intended to do it.
All you have to do is type “Frenchman MS Skydive Everest” into your favorite search engine and you’ll have pages of entries to read. As the press release must have been rather short, all of the pages say pretty much the same thing. I’ll go ‘report’, therefore, on the event but simply pick my jaw up off my desk and react.
W...
Source: Life with MS - October 30, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis awareness Living with MS world MS day Source Type: blogs
Could a Common Bacteria be the Environmental MS Trigger?
The more we study the human genome, the more likely it seems that there is what is known as a ‘genetic susceptibility’ to multiple sclerosis. If we follow this theory of course, we must wonder why everyone with these suspect genes doesn’t get MS. The general thought is that some form of environmental ‘trigger’ sets the MS ball in motion for those of us with said gene makeup.
It’s often thought that a virus might trigger MS (in fact, some think of viral triggers for many autoimmune disorders). A new study released this month suggests that this trigger might, perhaps, be bacterial rather than viral.
Accordi...
Source: Life with MS - October 28, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis clinical trials MS treatment multiple sclerosis clinical trials research Source Type: blogs
Multiple Sclerosis Activism, Advocacy and Campaigns
Tis the political season in the USA but then again, when isn’t it anymore? In fact the whole world seems to be on a never ending political treadmill.
I’ll admit that I have purposefully stepped back from a former near-addiction to the political comings and goings in major countries around the world. But I still keep my fingers in the work of MS Societies around the world to see what’s happening and how I might help.
You needn’t be a Poly Sci major or government wonk to make your voice known. A simple mouse click or two will bring you in touch with dedicated professionals and volunteers who can help get you in...
Source: Life with MS - October 25, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis awareness MS Advocacy ms community Source Type: blogs
October, 2013; How’s Your MS Today?
Each month for the past seven-odd years we have opened the cyber floor to a free discussion with our community, our friends, our visitors and with ourselves. It gives us a chance to stop, look around, look inward (and outward) and take stock of how we really are.
Some months are better than another, some worse. Some symptoms come, some go. Even members of our community drift in and out as the feel the need to be in on the conversation. No matter what, however, the forum is here for all of us when we need it.
It’s early this morning, so I don’t think I can quite tell how my MS is today, but in the last few weeks...
Source: Life with MS - October 23, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis How's your MS Today? Source Type: blogs
MS Symptom Thesaurus: Nystagmus
We began the MS Symptom Thesaurus back in May of this year with a post about the very common symptom of Fatigue. We’ve covered many of the more familiar symptoms in the months since. Today we begin to move into more specific and unusual symptoms of multiple sclerosis.
Today we offer the topic of Nystagmus, which the National MS Society defines for people with MS as, “…uncontrolled horizontal or vertical eye movements.” They go on to say that, “Nystagmus may be mild, only occurring when the person looks to the side, or it may be severe enough to impair vision.”
While there are some treatments that help the...
Source: Life with MS - October 21, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis MS symptoms Multiple Sclerosis Thesaurus Source Type: blogs
MS Good Days and Bad Days Are a Moving Target
A few months after we began the Life With MS Blog I had had the fortune of attending an NMSS sponsored yoga series. I was struggling with an awful lot (not just MS) back then and the soulful sprite who taught our classes saw beyond my broken body and helped me to see as well.
When someone bemoaned their ability do to a “bad leg”, we were all treated to a lesson about what is bad and what is good.
Since that day I have strived to focus on the good as much as possible. I’m not a Pollyanna but a pragmatist. To me the truth is that it doesn’t matter if it’s a good day or a bad day; it’s about what to do to wr...
Source: Life with MS - October 18, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis Living with MS MS symptoms Source Type: blogs
The Whole Disabled Parking Thing – AGAIN
It is nearly a year since I have been without a car. We sold my old VW van a few years ago and since sifting to the wilds of West Kerry, haven’t found the need to replace our wheels. It’s been a healthy transition for us and the public transport system lends itself to the deliberate life we’re trying to live.
It also makes me a bit detached from the topic of disabled parking which has been an issue for me in the past.
Thanks to the interweb and an old schoolmate, I was made aware of a story emerging from my boyhood home. Seems a man with a very real need – the guy has used a wheelchair for nearly two decades ...
Source: Life with MS - October 16, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis awareness Living with MS Social Media Source Type: blogs
