MS News: May 2017

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MS in the media – 2017 Meeting American Academy of Neurology (AAN)

  1. Aubagio in people at risk of MS
  2. Cladribine
  3. Gilenya
  4. Lemtrada long-term data
  5. Lemtrada and black people
  6. Opicinumab
  7. Siponimod
  8. Importance of early effective treatment
  9. NEDA challenged
  10. Measuring disease activity in progressive MS
  11. Predicting risk of conversion to SPMS
  12. Risk factors for MS in children and teenagers

Continue reading “MS News: May 2017”

Humans Multiple Sclerosis

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When it comes down to awareness-raising and thought-provoking initiatives in the health charity sector, fresh ideas are often hard to find.

Not so for Joan, a dear friend of mine. After her original Selfie Book idea created by her regional MS branch for World MS Day in 2015, Joan wanted to expand this Facebook idea and create a book for newly diagnosed people. Her own diagnosis – raw, no counselling, no management plan or words of inspiration from others who already walked down the same path, was something she wished had gone differently. In short, Joan was looking for a sign of hope, and something “telling me how people can get on with living a good life and that it wasn’t the end.”

She introduced her Humans Multiple Sclerosis project to the Irish Minister of Health and received a small government grant to develop her original Selfie Book idea. Continue reading “Humans Multiple Sclerosis”

Oh my god, I am (so not) dying!

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You know you’re on to something when you recognise your medical file from afar, even when it’s tucked between 15 other colourful medical records.

Sadly, this is a fact that even World MS Day on Wednesday, May 30th can’t heal. Nevertheless, as a global community of approximately 2.3 million people with MS, being part of the solution – a.k.a. spreading awareness and pushing for a cure – can be infinitely rewarding. On WMSD, I feel an even greater purpose to be part of that solution, whether it is by attending disability-related meetings and spreading the word afterwards, or simply by becoming more conscious of the problems people with MS and other disabilities are facing in the world today.

Continue reading “Oh my god, I am (so not) dying!”

Hope cures old wounds

To mark World MS Day 2017 here’s a flashback moment from 2015!

“As sobering as this post sounds, I tolerate MS. There’s no resentment or blame, no more heartache, guilt or doubt. I find solace in seeing science produce more and better research results and medication. Clinical trials are moving forward at a pace that will eventually lead to an easier life with an illness that is as fickle as MS.”

To read the whole post, please go to Hope Cures Old Wounds 

Don’t forget to share with #LifeWithMS as hashtag!

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© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2017. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner are strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.

10505565_271992656337777_3335423019850516985_n‘Hypochondria? It’s the only disease I haven’t met yet.’ One of the easier jokes I can actually remember as I simply don’t do can’t remember long ones.

MS? Awkward, puzzling, easier said than done, and the type of illness that carries this tagline, “The illness is mine, but the tragedy theirs,” when asked how your family feels about your condition. Buzzwords that don’t exactly calm down an overactive mind.

Any illness is unwelcome, that much we can agree on. MS can strike in so many different ways that your life often resembles a war zone. When I entered the MS academy, I read the small print and knew it wouldn’t be a 365-day holiday. But, if one good thing has come from being diagnosed ten years ago, it’s the perception that no matter what happens, life goes on.

And boy does it go on.

View original post 493 more words

Top 10 MS support pages on Facebook

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Multiple Sclerosis Ireland
@MultipleSclerosisIreland
Provides information, support and advocacy services to people with MS and their families. Learn more at Multiple Sclerosis Ireland website

 

OMS Logo

Overcoming Multiple Sclerosis
@OvercomingMS
OMS supports an evidence-based, positive diet and lifestyle program. Learn more at Overcoming MS website

Continue reading “Top 10 MS support pages on Facebook”

Paper dreams

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Have you ever wondered, “What exactly is my purpose on our little shining blue ball floating around in our vast universe?”

Have you?

Congratulations, so have I!

It took me the better part of my teenage years – if not very young adult life – to get to the stage where I thought, “Yes! Eureka! Yes, I found out what I am doing here!”

Translated, it sounded more like this, “I know where I am going to live!”

Part of the master plan that had been hiding in my unconscious mind had already been set in motion, albeit drifting rebelliously between my conscious and the harder to access unconscious level, before mischievously appearing again.

Continue reading “Paper dreams”

Injecting object

“The needle, so needed. The fluid, water of life. Not stopping my illness progressing, but slowing down relapses. MS, as always having more than one meaning, one more way of living it.”

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Injection needle, fridge. Taking out another pre-filled syringe to ward of future multiple sclerosis relapses.

To others? A scary thing, a daily habit they could not fathom.

To me? Now, the fluid of my life. For my life.

View original post 261 more words

MS News: April 2017

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Highlight!

  1. Canadian Study of MS-Prone Family Proves that in Rare Cases, Multiple Sclerosis is Inherited
  2. Large Family Study Strengthens Case for Inherited Multiple Sclerosis
  3. New Survey Finds Multiple Sclerosis Patients Struggle with Misdiagnosis and Invisible Symptoms

Continue reading “MS News: April 2017”

Jammed filter!

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For more on memory and thinking, click on the above image (©MS Ireland)

Every so often, people say things that shouldn’t be said.

Literally.

Some things just shouldn’t.

Us humans – living, breathing, excessively addictive to social media – have to endure the result of a very selfishly applied verb.

We communicate. And not always very well.

In fact, I am sure your brain-to-mouth filter runs into trouble every so often, and you have suffered from that same technical glitch just as much as I have.

We just cannot take back our words.

Continue reading “Jammed filter!”

MS News: March 2017

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Highlight still on American Healthcare Act, the replacement plan for the Patient Protection and Affordable Care Act (ACA) released by Congress on March 6, 2017

  1. Society Releases Statement on American Health Care Act
  2. National MS Society Urges Lawmakers to Oppose American Health Care Act
  3. Reducing Out-of-Pocket Cost Barriers to Specialty Drug Use Under Medicare Part D: Addressing
  4. Researchers find patients’ annual financial burden under Medicare Part D is ‘too much too soon’

 

New book by the honourable American/Irish author and friend Trevis Gleason!

  1. Chef Interrupted: Discovering Life’s Second Course in Ireland with Multiple Sclerosis

Highlight!

  1. Blood Diagnostic Test for Multiple Sclerosis to be Released in May 2017

Continue reading “MS News: March 2017”

[Throwback Thursday] Balancing life and a chronic illness

Oh, you can bet I am willing, I am usually more than willing. When physical restraints curb your potential, you realise that you want so more from your own life, and out of your own reality. Life is moving forward outside your medically induced world, and you feel annoyed when healthy people don’t realise the worth of their bodies, their unused potential.

It simply reminds you that being chronically ill sucks.

It’s energy being depleted in all the wrong places. There is no uptake to being ill. There is no room for maneuvering when you’re faced with an illness that will -quite literally- be there until you draw your last breath. Do take it from someone who’s already stared death in the face because of it; it is so not all it’s cracked up to be, honey.

To read the whole post, please go to: Balancing life and a chronic illness

©WVE and Ireland, Multiple Sclerosis & Me, 2011-2017. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner are strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to WVE and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.

UNCRPD, Ireland’s ten-year moral outrage

Ad nauseam.

Ah yes, you know the term.

In proper Wikipedia language, it reads “An argument or other discussion that has continued ‘to [the point of] nausea.” In Irish slang, “We are bloody well tired of talking or hearing about it.”

And that, dear reader, we are. Severely sick and tired of hearing that the Irish government will ratify the UNCRPD by a specified date, only to find out that they very silently forgot to live by that promise. Needless to say, having the gift of the gab in Dáil Éireann is an advantage, yet those we elected to represent our very needs refuse to use that gift when it matters most. Continue reading “UNCRPD, Ireland’s ten-year moral outrage”