Life with Multiple Sclerosis and Apollo 13: Successful Failure
I’ve heard it told that Mission Commander Jim Lovell never said the words “Huston, we have a problem…” which were made famous in the Ron Howard film, Apollo 13. It is true that he, along with NASA, considered the heroic teamwork that averted disaster in space was a “Successful Failure”. I had one of those this weekend and I believe that I’m going to start looking at life with MS that way.
On a weekend when thousands were gathered to ride their bicycles to raise funds for our cause at an event I have always been quite involved and when nearly 3-times the number of residents of our little fishing port town ...
Source: Life with MS - September 9, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis Everyday Health life with MS Living with MS MS fatigue MS Fitness Staying active Source Type: blogs
Jack Osbourne Dancing With MS Sparks Heated Conversation
Back in the days of scripted television, The Love Boat was the place to see Hollywood bygones, one-trick ponies and “where-are-they-nows.” Enter un-scripted shows (which are anything but real, though dubbed “reality TV”) and we find a second verse, same as the first. This time we swap a cruise ship for the dance floor and voilà, Dancing With the Stars.
Though dancing is one of the things mentioned when I once asked what we would do on the day after a cure for MS, we don’t talk much about high heels, spangles and dips (other than the old MS two-step). Social media lit up this week, however, when it AB...
Source: Life with MS - September 6, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis awareness comments community Living with MS MS and family ms community MS fatigue MS in the news Source Type: blogs
MS Book Club: Author’s Notes with Kristie Salerno Kent
Our reintroduction of the MS Book Club began last month with DreaMS: My Journey with Multiple Sclerosis by Kristie Salerno Kent. We are quite very honored that Kristie has agreed to write a guest blog for our “Author’s Notes” offering. Thank you, Kristie!
Hello Trevis and my MS family!
I was honored to have my book, DreaMS: My Journey with Multiple Sclerosis chosen as your August selection. I must confess that the last few weeks I realized that it meant that people were actually reading the very personal details of my MS journey. I suppose that is the point of writing a book though, right?!!! I truly apprec...
Source: Life with MS - September 4, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis Author's Notes life with MS MS and family MS Book Club MS in the news MS story Source Type: blogs
Holes in My Vision; MS or Age?
Earlier this year I posted a blog about my long-lived but rather minor double vision. Like many MS symptoms, I think I’ve just sort of adapted to living with this challenge as part of my live with MS. Last night, I believe I noticed another visual disturbance that I’ve likely ignored for a long, long time.
As I took my service dog, Sadie, out for a nighttime piddle before bed, the sky was clear and a waning half moon hadn’t yet risen. As I’ve said before, it’s dark here! The stars hung bright against the black velvet night like the strings of bare bulbs around the car park Christmas tree logs of my mid-we...
Source: Life with MS - August 28, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis Source Type: blogs
MS Makes Me Weak in the Thighs(!?!)
MS is a strange and unpredictable disease. We do, however, seem to become used to, if not the ‘what’ at least the ‘how’ it can mess with our abilities. I’ve learned to cope with, if not expect, the manners in which I have lost certain abilities partially or in whole. This past weekend, however, the old thief caught me flat-footed.
I’ve come to accept that the destruction MS causes in my brain and spinal cord can cause weakness in strength and difficulties in coordination. When my arm tremors or my feet can’t keep up with my body – and I tumble – I can get my brain around what is happening.
W...
Source: Life with MS - August 26, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis Living with MS MS Fitness MS pain MS symptoms Symptom management Weakness Source Type: blogs
MS Symptom Thesaurus: Trigeminal Neuralgia
We’ve been on this ‘MS Symptom Thesaurus’ for a while now and many of you are stepping up with your experiences. These simple little phrases with which you describe your symptoms have helped many others to explain how they are feeling to doctors and to family.
Today, we take on a particular kind of painful MS experience; Trigeminal Neuralgia (TN) also known as tic douloureux.
This shooting facial or jaw pain can be quite debilitating and, while I have never experienced it, have heard many people describe their agony at living with the excruciating pain.
I have heard it described as a “nuclear toothache”, “ele...
Source: Life with MS - August 23, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis community Living with MS MS pain MS symptoms Multiple Sclerosis Thesaurus Source Type: blogs
Organ Donation for Transplant with Multiple Sclerosis
A recent blog post about the plight of Sherri Muzher and her struggle to be of use beyond her life by donating her organs (while still alive; thus hastening her death) spared a lively conversation in the comments section. One of the questions and concerns tables was whether or not Ms Muzher’s organs and tissue would even be acceptable as transplant options for people in need.
As I often do when we come upon a medical question in our discussions, I reached out to several experts for clarification. In this case is was Dr James Bowen, M.D. of Swedish Neuroscience Institute. Dr Bowen is not only a respected researcher ...
Source: Life with MS - August 21, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis clinical trials comments MS and family MS doctors MS in the news multiple sclerosis clinical trials multiple sclerosis cure research Source Type: blogs
Multiple Sclerosis and Fever Make Old MS Symptoms New Again
I woke last Wednesday morning with a morning plateful of things that had to get done. Caryn needed to get to a volunteering gig, our hired car needed to be returned and that meant a 2-leg bus ride back to our town and houseguests were expected the next afternoon.
I also woke with flu.
You just know; don’t you? I think even our dog, Sadie, knew as she was on the bed with her chin on my leg in comfort.
I was slow to rise – but that’s not anything new to someone with multiple sclerosis. As I went about my morning inventory, however, things weren’t fitting into place.
As Caryn hustled around to ready herself, I s...
Source: Life with MS - August 19, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis community MS fatigue MS pain MS Sleep Symptom management Source Type: blogs
Last Call for MS Book Club Chat
Earlier this month we posted our first MS Book Club blog in quite some time. We’ve had a few comments on the blog page and a few more on the Life with MS facebook page.
I wanted to give everyone who has availed themselves of the free download of the book and read one more chance to get your thoughts into the comments section.
I’ll be bundling up all of your comments and sending them off to the book’s Author, Kristie Salerno Kent. She has graciously agreed to write a guest blog for us, addressing your comments. Seriously! How often do we get a chance like that?
Be it praise for her coping skills, thanks for th...
Source: Life with MS - August 12, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis life with MS Living with MS MS and family MS Blog HIstory MS Book Club ms community Source Type: blogs
A Discussion Beyond Death and Multiple Sclerosis
Please be forewarned. There are links at the bottom of this blog which may be quite very disturbing for many of us living with MS and for our families. If you chose to watch them, please do so from the point of view of the considered life.
Last month, I wrote a blog for the National MS Society about death from ‘complications’ of MS. It was a furthering of a discussion we have had in these pages. It is not an easy topic to bring up for anyone; maybe particularly for people living with a disease like MS. It was, however, a discussion that I feel was important to have as many people did now understand (and vocal...
Source: Life with MS - August 9, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis Death from MS life with MS Living with MS Medical Ethics Source Type: blogs
As it’s Already August; How’s Your MS Today?
Ever since 2006, we’ve taken one blog post per month to stop the research, stop the reporting, stop the looking outward and we stop to reflect. I’ll admit that in those first years, simply coming up with a topic could take hours, a static monthly entry was attractive for it being one subject I didn’t have to think up.
Now, however, I look forward to the “how’s your MS today” blog because it perennially gets great comments.
I get ideas for further blogs; I “meet” new community members and check in with old friends. We benchmark ourselves and our symptoms, we commiserate over shared grief and we joint...
Source: Life with MS - August 7, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis How's your MS Today? Living with MS MS Book Club Source Type: blogs
MS Mental Holidays
I got a lovely note from the editor of the MS Society of the UK Blog last week, Friday. She was very kind in checking in to see how things were going. The correspondence made me realize that I didn’t remember seeing my latest blog post for them. Then I had the epiphany that I HADN’T WRITTEN IT!
I thought about the topic, I began writing the document; I just never finished… and thought I had.
She and I had a good chuckle about it as I called it an ‘MS Mental Holiday’ that I took during the heat of July. But “mental holiday” is exactly what it was. It’s not just a getting older thing; it feels like ...
Source: Life with MS - August 5, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis life with MS Living with MS MS and family MS symptoms Symptom management Source Type: blogs
Multiple Sclerosis Is a Two-Handed Thing
So, for the record, I’m a card carrying member of the child-free. That being said, I’ve loads of friends with children of all ages. One thing I’ve learned from the toddling set, which will be placed into full use this weekend is “Two Hands.”
It’s a long weekend here in the Kingdom of Elsewhere, and I’ve got a “honey-do list.”
One of our projects – okay, it’s the only one of our projects; I know better than to over-plan – is some painting on an old piece of furniture we purchased. Most of the work can be done while seated, we’ve put up a canopy to block the sun or rain (always prepare...
Source: Life with MS - August 2, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis dropping things Living with MS ms community MS fatigue unsteadiness Source Type: blogs
Multiple Sclerosis Book Club: DREAMS by Kristie Salerno Kent
“The word ‘DREAMS’ may end in MS but MS didn’t end my dreams, don’t let it end yours” lives large as a theme throughout Kristie Salerno Kent’s new book, DREAMS.
Many of us first came know Kristie through a short film she produced in conjunction with that National MS Society’s Moving Forward Film Festival a few years back. We find out through this tome, that she had been reaching out to people with MS for a number of years prior to that.
The precursors to diagnoses that are mentioned in the first chapter, Dreaming of the Spotlight, can be all too familiar to someone living with multiple sclerosis. Kristi...
Source: Life with MS - July 31, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis Living with MS MS Book Club MS story Source Type: blogs
Difficult Little Reminders of Life Before MS
While I am a believer in asking myself certain “what if?” questions, I don’t usually try to think of what my life might have been like if I hadn’t been diagnosed. In fact, when your forced me to think about that question when our community interviewed me a couple of years ago, I realized that life’s inertia carried me further than I’d expected that it had.
The idea of projecting what where I might have been – in relationships, in my career, in any aspect of my life – without MS is really nothing more than an uneducated guess (and really not worth my time).
The fact of the matter is, however, that we were ...
Source: Life with MS - July 29, 2013 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis life with MS Living with MS Source Type: blogs
