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.
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.
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 disease eradicated from my central nervous system? It is not fair. Nobody deserves to be here. Nobody is ever prepared to hear what the stranger in front of them will have to say. A neurologist looks at your test results, gazing, thinking. Do they wonder how they will tell you that from this minute onwards, your life as you once knew it, is now over? Unfair is the way it was thrown at me, at…
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. Which most times amounts to our identities”. So where do I begin? Do I even want to answer this? Will it lead to feelings I thought half forgotten?
It’s OK not to be OK
Chronic pain. Those who have it, can’t wait to get rid of it. Those who don’t, often do not understand what is going on in people’s bodies filled with chronic pain 24/7. Not to reminiscence too much about the good old days – those where the pain was not a constant, unwanted house guest – but I cannot remember what living without pain was like. Waking up feeling jolly, not a single bout of pain stabbing my face, being able to keep my balance on my way to my bathroom, high energy levels… All this was abandoned long ago, and even after 8 hours of sleep, I just can’t remember what life felt like. Healthy people often take their fitness for granted; they don’t question their bodies underperforming for a…