News: July 2014

A lot of news on the research front in July, which can only be good. It’s a joy, relief as well as hope that one of those research projects or trials might lead to longer periods of remission, and perhaps a return to lesser disability for those with primary and secondary forms of multiple sclerosis. […]

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Wonder Woman Syndrome

“Having dissenting views on the verb ‘to pace,’ it is one I need to add seriousness as well as a lot more thought into. Having a Wonder Woman Syndrome is a term I sometimes carry with pride.”

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MS News: June 2014

Research results Fatigue in Multiple Sclerosis Linked to Regional Brain Damage Multiple Sclerosis News Today – Fatigue, a common symptom of multiple sclerosis, could be a result of regional damage in the brain. Multiple sclerosis Reactivation of Epstein–Barr or herpes viruses not associated with MS relapse Nature.com – Infection with the Epstein–Barr virus or human […]

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Game, set, relapse!

“In short, if I’d have to sell myself with these words, I still wouldn’t receive a Booker prize. I could post “Another MS Relapse” award on the fireplace mantel, but they’re just a waste of space. I thought of referring to a relapse as something you just have to get your teeth in, but I don’t want to steal Luis Suárez’s limelight.”

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Volunteering, a worthy cause

“In fact, for anyone interested in volunteering, research shows it can be beneficial in improving mood, self-esteem and quality of life, and in reducing stress, pain and depression. It also shows that ill people who volunteer, become better at managing their own illness in turn and volunteering can strengthen their immune system.”

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MS News: May 2014

With a 14-day delay in posting some positive news about MS, I’d like to offer my apologies and no, I absolutely haven’t forgotten about you. As many people with MS know, May is about the busiest month for those who advocate and volunteer. World MS Day is the main day of the year for MSers, […]

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Irish public transport: access all areas?

“At this stage, I thought “Do I really have to walk with my coffin under my arm to get a seat when I’m physically leaning on a walking stick while holding the handrail as if it was my best friend?””

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MS Organisations

IMSM featured image

MS Cure Fund – Excellent source of MS patient education programs Can Do Multiple Sclerosis Accelerated Cure Project for MS Multiple Sclerosis Association of America Multiple Sclerosis Foundation Multiple Sclerosis Research Center of New York Myelin Repair Foundation Nancy Davis Foundation for Multiple Sclerosis NARCOMS Registry Bike The US For MS MS MOMS Multiple Sclerosis […]

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MS Trust 21 Challenge

“Here’s a breakdown of the challenge (you will be linked to the MS Trust website to enter). Like they say: “Keep the trust posted on the challenges you’re taking part in by sharing your stories and photos on Twitter and Facebook using hashtag #MSWeek!””

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Meet your new MS Ireland writer!

“It has been a bit of a hectic, but a great time to write lately. Two bits of fantastic news came my way in regards to my writing, and I’ve been over the moon since.”

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MS News: April 2014

Research results Enhanced uptake of multiple sclerosis-derived myelin by THP-1 macrophages and primary human … 7thSpace Interactive (press release) – The pathological hallmark of multiple sclerosis (MS) is myelin phagocytosis. It remains unclear why microglia and macrophages demyelinate axons in … Textured insoles could be a positive step for people with MS UQ News – University […]

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MS News: March 2014

A little bit later than usual, for which I apologise, but here is the good news that graced global media in March 2014.

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Relentless relapse

Why? A relapse decided to visit me. I pretended it wasn’t there. Until this morning.

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MS News: January 2014

Primary Progressive, Relapse-Free Secondary Progressive Multiple … BioNews Texas – secondary progressive multiple sclerosis nerve While there have been a number of success stories for MS research in 2013, last year saw yet another … Gov candidates cool to more marijuana legalization Kansas City Star – Most Republicans said it was too early to decide, but […]

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MS News: December 2013

With a bit of a delay, here is the good news in MS-world that found its way to the media in December 2013! Provincial MS strategy applauded Announced Nov. 25, Health Minister Fred Horne said the strategy – The Way Forward – “connects the dots” in the health care system so that Alberta’s almost 14,000 […]

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MS News: November 2013

Thirty pieces of positive MS news published in November to brighten your day! Multiple sclerosis appears to originate in different part of brain than long believed Steven Schutzer, a physician and scientist at Rutgers New Jersey Medical School, has now found an important clue why progress has been slow – it appears that most research […]

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The Spoon Theory

Today I was reminded of a story I heard of a few years ago about a girl who lives with lupus and who tries to explain to a friend what life with a chronic illness, especially fatigue, is like. It is told in a very powerful and imaginative way that will hopefully shed a better […]

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MS News: October 2013

Childhood Stress Not a Likely Trigger for MS Stressful life events in childhood did not appear to increase the subsequent risk for multiple sclerosis (MS), researchers said. In large Danish cohort study, children who experienced stressful life events had a weak 1.11-fold risk (95% CI 1.02-1.20) of later developing MS compared with unexposed children, according […]

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Slowing down

A friend sent me this picture this evening as a reminder that I need to take a step back from writing, reading, advocating and generally helping others so I can “get better” again. We all know people with MS do not “get better” but I understood his reasoning… I need to sleep more,  relax more […]

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International Trigeminal Neuralgia Awareness Day

International Trigeminal Neuralgia Awareness Day on October 7th 2013: Today is the first Trigeminal Neuralgia Awareness Day, please watch this video and sign the petition to get the World Health Organisation to add this to their ‘Health Topics’ lists to get more research and funding into this debilitating symptom: http://www.ipetitions.com/petition/trigeminal-neuralgia-awareness-day/ http://www.tnnme.com/ ©Willeke Van Eeckhoutte and […]

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Trigeminal Neuralgia Awareness Day

Tomorrow is the first Trigeminal Neuralgia Awareness Day, focused on bringing awareness about facial pain disorders. This year I have gone through severe TN attacks myself and I therefore want to spread awareness about Trigeminal Neuralgia, also called “the suicide disease” because of the severity of pain experienced. “The presumed cause of TN is a […]

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MS News: September 2013

Just because multiple sclerosis too often has a negative undertone, here is some good news that was published online lately! Gene discovery! Gene discovery is major step towards finding cure for multiple sclerosis, researchers believe. Brand new helmet! Harding, the Minnesota Wild backup best known as the winner of the 2013 Masterton Trophy for his […]

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Sleep: a time-consuming commodity

Shoulders back, head held high. Striving to soldier on, wanting to do more. Body says ‘no’, mind perhaps too. This morning I ran into my leading enemy. Not the one I declared war to over some silly misunderstanding when I was 8, nor the one who swore she would never talk to me again when […]

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Unfair

Once again I am here. A small, busy waiting room in hospital. People waiting, wondering, dreading, hoping. How much longer will I need to be here? When will it be the last time I can walk in here with a neurological illness and when will I be able to walk out with that nagging, progressing […]

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Beware of the thief!

In between trying to set up a new laptop today and resting enough before another batch of daily tasks comes my way, I came across an email about MS and the question what MS has stolen from us. In her blog post, Nicole Lemelle says “Multiple Sclerosis robs us of our outside roles and independence. […]

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Dissecting words

“Billie… smile!” “Billie, this is a business company, not the beach!” “Oh Bee, you’re such a bad dancer!” “It must be great being on sick leave so much; it’s like being on a long holiday!” “Look at her, Monday morning and still drunk!” These sentences might just be background noise to some, but to a […]

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Shortlisted!

After a holiday which wasn’t really a holiday – flying home because a family member passed away is hardly reason to have that excited holiday feeling – and trying to sleep while having half an eye fixed on the Ireland Blog Awards 2013 website every so many hours for the last week or so, I […]

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Single life?

“However, I am not MS and MS is not me. It may reside inside my brain but that is where the relationship ends. I accept it is there, but it will not make me long for a relationship just to be in a relationship, or to have someone present to care for me day in, day out. Quite independent, indeed.”

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Being active

Last week I received an invitation to take part in the 2013 National Meeting Day panel discussion on September 28th by the MS Society of Ireland. Needlessly, I accepted straight away as ‘Being Active and Interactive’ is something that lies close to my heart. If you’ve been part of my blogging community for a while, […]

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Every leaf speaks bliss to me

As the days grow shorter and temperatures colder, it is time to welcome autumn, and indeed, what should be a small new lease of life. There is nothing more comforting and relaxing than seeing daylight fade early in the evening. Darkness captures me, telling me that time has come to cuddle up on the couch, […]

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Debunking CCSVI, or not?

Last night I had the bright idea to write something about the frequently talked about, always fought over treatment for CCSVI, Chronic Cerebrospinal Venous Insufficiency, named so by Dr. Paolo Zamboni in 2008. According to Zamboni, he “cured” his wife of her own MS because he found a compromised flow of blood in her neck […]

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The worst snoring secret is out!

So yes… I snore. Considering how much weight I gained after too many MS steroid treatments, one side effect was completely overlooked. I am now the owner of a good habit of sounding like Miss Piggy at night. Steroid treatments should lift energy levels, not snoring. But I do… Like Miss Piggy.

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Waiting

Neurology waiting room in hospital. People waiting, wondering, dreading, hoping. It is not fair. Nobody deserves to be here. Nobody is ever prepared to hear what the stranger in front of them has to say. A neurologist looks at your test results, gazing, thinking. Do they wonder how they will tell you that from this […]

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This is the Life, by Marie Kane

To people living with MS, this poem is for you… This Is the Life So what if gods, fates, genetic mysteries haven’t been kind? We all have our crosses and I don’t believe in the ecumenical notion that all crosses are equal so no cosmic deal with God would allow me to place someone else […]

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