Playing God
We all have good friends and we all have fantastic friends. You know the type, the ones that will stick around for an hour when nobody else will. Every now and then, however, we realise we have insanely outstanding friends and feel how one simple sentence they say, can change days, if not weeks, of feeling, let down. Living history, living it right now. Last night I wrote this on my Facebook wall: “Take away. Rugby. Bed. Sleep. Approx. waking up 4 times before 8am. Get up 8.01am for meds. Go back to bed until noon. Wake up for meds. Sleep until 8pm tomorrow. Meds at 8.01pm. Back to bed. And the beat goes on. And on. And on.” I know… it sounds intense, but it was not my intention…
2014 Budget plea to the Irish government
"A heart transplant is easy enough these days, but brain transplants belong in the world of fantasy. Because of that, urgent reconfiguration of existing services should be done."
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 Ireland, Multiple Sclerosis & Me, 2011-2013. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is 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.
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. [youtube=http://www.youtube.com/watch?v=H-8PCv4UWJo&w=420&h=315] “The presumed cause of TN is a blood vessel pressing on the trigeminal nerve as it exits the brainstem. This compression can wear away the protective coating around the nerve (the myelin sheath). TN symptoms can also occur in people with Multiple Sclerosis (MS), a disease caused by the deterioration of myelin throughout the body, or may be caused by damage to the myelin sheath by compression from a tumour.
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 courageous fight against Multiple Sclerosis, has a history of working up some pretty sweet helmets with artist Todd Miska. Vitamin D: reverse or halt? In search of a better option for MS patients, a team of University of Wisconsin-Madison biochemists has discovered a promising vitamin D-based treatment that can halt — and even reverse — the course of the disease in a mouse model of MS.
Being active online
It’s two days after travelling 230km west for MS Ireland’s National Meeting Day in Galway, Ireland. It was a fantastic day, and I learned a lot, but it was just as great being able to share information on how to be interactive when you have a mountain of free time when you’re stuck at home. “Panel Discussion: This session looked at practical ways people with MS keep active in employment (Grace O’Sullivan), through the internet (myself), physical activity (Anne-Marie McDaid, Olympic Gold Paralympic medalist) and through MS Ireland’s work and activities (Mark Mitchell). Trevis Gleason, chef, blogger and MS advocate facilitated this session. For the benefit of others living with multiple sclerosis, and to use the long list of how to be interactive I had written beforehand, I will add some of…
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 I was 15, but one much closer to my heart. Me. Sometimes people say you have to confront in order to conquer. But what if this is a person, namely, yourself? I’ve had many confrontations with myself, but I’ve never been a good listener. If/when given the choice, I’d rather kick up some more dirt than having to listen to the rules. Especially when it comes to having to rest. And sleep.