‘Accessible’ Cooking for People With Multiple Sclerosis
This past weekend is still a bit of a blur for me. The trip from home to the Dublin airport, plus the flight to London City Airport, plus a short transfer to my hotel near the ExCeL London convention center took most of Friday and left me quite exhausted. And that was just the travel for an event in which I was to participate over the next two days!
After a surprisingly decent night’s sleep, I rose and loaded my body with as much anti-fatigue medication as the prescription allowed and made my way to the event: MS Life 2016.
This biannual event took place across the hall from the 32nd annual congress of the European Com...
Source: Life with MS - September 20, 2016 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis Living with MS MS Around the Globe Source Type: blogs
Explaining MS When Others Can ’t or Won’t Understand
I miss much from my former career as a chef: I was good at my job, I was respected for my work, and I associated with some of the best people I’ve ever come into contact with.
I’ve said before that it’s by remembering the skills from our “former” lives and applying them to multiple sclerosis (MS) that we can most successfully live with MS.
I was thinking of one particular lesson I learned and passed along to my staff that I thought might be helpful to some who are having a difficult time with others who persist in misunderstanding MS.
Start With a Clear Explanation
In the middle of a long-term consulting gig,...
Source: Life with MS - September 14, 2016 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis awareness Everyday Health life with MS Living with MS MS and family relationships work Source Type: blogs
How Has MS Affected Your Family Planning or Your Pregnancy?
For many years, there’s been anecdotal evidence that multiple sclerosis activity can slow — and some symptoms even improve — during pregnancy. The evidence was so strong that a multiyear study of the effect of hormone therapy to mimic pregnancy has been undertaken to test whether higher levels of a type of estrogen is behind this phenomenon.
As a man — even a man with MS — I have no way to experience this firsthand. As an “enlightened” man, I wouldn’t even try to comment on it. I suppose it’s not unlike the blog we posted on MS and menopause a number of years ago. I simply cannot make any informed...
Source: Life with MS - September 7, 2016 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis life with MS Living with MS MS and family Source Type: blogs
How to Find Your Own Light After the Darkness of an MS Flare
I see that two months have passed without my offering our monthly check-in blog. So I’ve decided to jump right into September with that as our first post.
I think I’m getting my head around the fact that if I don’t do something when I think about it, I may not remember that I was planning to do it.
August — the month of the ancient Irish Lúnasa celebration and of my birthday — slipped past me this year, as I was in an exhausted haze. My months-long MS relapse had stopped its free fall, and the past weeks have found me stutter-stepping my way back to whatever my new normal will look like.
I mention Lúnasa beca...
Source: Life with MS - September 2, 2016 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis How's your MS Today? life with MS trevis gleason Source Type: blogs
Paleo Diet vs. Sw. Diet for Multiple Sclerosis: Can Either Help Fatigue?
When the National Multiple Sclerosis Society announced last week that it was funding a study on nutrition and MS fatigue, many in the multiple sclerosis world were excited. When those people found out the research was to be conducted by controversial MS figure Terry Wahls, MD, enthusiasm waned for some — but the Society is holding the researchers to very high standards.
I look forward to the results in about four years’ time.
The study proposes to compare subjects’ standard diet with either the Wahls Protocol (a modified Paleolithic diet) or the Sw. MS Diet (a low-saturated-fat diet) as it relates to MS fatigue. Pr...
Source: Life with MS - August 30, 2016 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis MS fatigue MS symptoms multiple sclerosis clinical trials research Symptom management Source Type: blogs
Who ’s on Your MS Acknowledgements Page?
I just finished reading chef Eric Ripert’s memoir, 32 Yolks. It’s a touching book about his journey from his mother’s table to working a restaurant line. After hungrily devouring the book in a couple of evenings of reading, I dug into the dessert that most authors offer at the end of their works: the acknowledgements.
As a writer who was fortunate enough to have been given a page to thank those who helped with my own memoir, I always enjoy reading what others write in their acknowledgements pages.
I think of these final pages as something sweet offered up after the main course. And just as our preferences vary when ...
Source: Life with MS - August 25, 2016 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis awareness books about MS community Living with MS trevis gleason Source Type: blogs
With MS, Ordinary Acts Become Feats Worth Celebrating
We don’t get to see the “beautiful game” of hurling much in West Kerry; this is Gaelic football country. The two games are not dissimilar in their rules, finesse, and skill required — and they can be equally confusing and brutal to the first-time observer.
Each team’s supporters are staunch in their conviction to club and county. We are in the final throes of the All-Ireland Championships, with the second semifinal due to be played next weekend. Kerry meets Dublin on Sunday, and the Green & Gold (our county flag) will be waving in nearly every garden and from all the streets and buildings in our...
Source: Life with MS - August 23, 2016 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis awareness community life with MS Living with MS MS Around the Globe trevis gleason Source Type: blogs
Progress and Progression: When MS and Modern Life Intersect
There is a field at the end of our lane, just a few dozen yards beyond our cottage. I should say there was a field.
This rough patch of ground has been owned by a builder friend of ours for a number of years. While the economy was in the tank, there wasn’t even thought of building anything on this T-shaped plot of about 15 acres.
In the years we’ve been living next to this field, there have been horses and sheep illegally quartered there by people looking of a bit of grass for their animals, a family of donkeys put there every winter (with the owner’s permission), and seasonal raids during which we’ve foraged for...
Source: Life with MS - August 19, 2016 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis life with MS Living with MS trevis gleason Source Type: blogs
Turning 50 With MS: A Time to Look Forward and Back
When I was 30 years old and living in Ithaca, NY, I had what felt like an epiphany. While walking past a renowned Buddhist monastery after a haircut one day, I was struck by the thought that I would not live to see 50.
I perceived this not as a reasoned assessment based on the fact that my father’s generation of his family was the first to live past 50 in over 150 years, but rather as a stop-in-your-tracks truth spoken from somewhere outside of my being.
In the years since, I’ve tucked away the memory of that moment and its sobering message, only recalling it now and again.
Gin and Tonics for Lunch
It’s a beautiful m...
Source: Life with MS - August 16, 2016 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis life with MS Living with MS MS and family trevis gleason Source Type: blogs
No More Hiding My MS: A Friend ’s Honesty Sets Me Free
My wife, Caryn, knows my struggles with multiple sclerosis (MS) better than anyone, save perhaps for my dog Sadie. Caryn can spot a rough patch rising in the way I move or speak or even react to a conversation. Many times, she keeps these observations to herself, but she can always recall when things started to go off the rails.
I allow myself to believe that I’m getting on well enough these days. I laugh about the tough stuff when I can. I rest when I must. I just try to get on with life, even though there is a heavy ball and chain attached to it.
Caryn, however, knows when new weight has been added to that ball.
Though...
Source: Life with MS - August 9, 2016 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis life with MS Living with MS MS and family MS symptoms trevis gleason Source Type: blogs
Spasticity: Another Symptom of My New MS Normal
My wife, Caryn, was the first to notice one of the things that seems to be part of my new normal as I recover from my last MS “thing”: She asked me a couple of times about my left hand as I was doing (or trying to do) something that did not involve that appendage.
While I was walking with my crutch, reading your comments, or simply having a chat with our dogs, Caryn noticed my left hand was curling at the wrist and fingers. I straightened it out as much as I could, but within a few minutes it was back in the same position.
Caryn said it was as if I was “throwing gang signs” as I walked. I love my SoCal gi...
Source: Life with MS - August 3, 2016 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis MS symptoms Multiple Sclerosis Thesaurus Source Type: blogs
Tripping and Falling: My New Normal With MS
I’m more than a month on from my latest multiple sclerosis setback and trying to settle into yet another new normal. A recent meeting with my MS specialist confirmed that my disease has, indeed, progressed since my appointment last spring.
Along with increased spasticity in my left arm and hand, expanded vision issues, and more pronounced speech issues, my left leg has become weaker.
The latter has evidenced itself in a fair number of falls over the past months.
Now, some of my falls are not related to tripping: Often, I’m doing little more than standing when my left leg gives out and the right side is too ...
Source: Life with MS - July 28, 2016 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis Living with MS MS symptoms Source Type: blogs
The Importance of Having a Support Network When You Live With MS
First, thank you all for your kind messages of support as I try to find my literal and figurative balance again. Your comments on the blog and social media, along with emails, have been heartening.
This little episode I’m going through, and your reaching out in solidarity, has reminded me of the importance of having people around (in person or virtually) who understand or at least empathize with what those of us with multiple sclerosis (MS) are going through.
Living in a small town as I do, I don’t have the kind of access to professionals and others who know about MS that I did when we lived in Seattle. What’s more, ...
Source: Life with MS - July 14, 2016 Category: Neurology Authors: Trevis Gleason Tags: multiple sclerosis life with MS Living with MS trevis gleason Source Type: blogs
I ’ve Been Deluding Myself About My MS: It’s Worse Than I Thought
Many of you who have been following this blog for a few years or have read my book, Chef Interrupted, will know that I use the mantra “control is an illusion” fairly often. What I’ve come to know is that we can only control our reactions and our responses; everything else is pretty much out of our control.
Today, after a couple of weeks of new multiple sclerosis (MS) symptoms and progression that is hanging on with a grip far better than mine, I have to wonder if I haven’t replaced my illusion of control with a delusion of normalcy.
Appalled by How Far I Have Fallen
I have been appalled by how far I seem to have fa...
Source: Life with MS - July 12, 2016 Category: Neurology Authors: Trevis Gleason Tags: MS multiple sclerosis Living with MS MS and family MS symptoms trevis gleason Source Type: blogs
I’ve Been Deluding Myself About My MS: It’s Worse Than I Thought
Many of you who have been following this blog for a few years or have read my book, Chef Interrupted, will know that I use the mantra “control is an illusion” fairly often. What I’ve come to know is that we can only control our reactions and our responses; everything else is pretty much out of our control.
Today, after a couple of weeks of new multiple sclerosis (MS) symptoms and progression that is hanging on with a grip far better than mine, I have to wonder if I haven’t replaced my illusion of control with a delusion of normalcy.
Appalled by How Far I Have Fallen
I have been appalled by how far I seem to have fa...
Source: Life with MS - July 12, 2016 Category: Neurology Authors: Trevis Gleason Tags: MS multiple sclerosis Living with MS MS and family MS symptoms trevis gleason Source Type: blogs
