MS: Mucho Suckful
It's Multiple Sclerosis Awareness Week this week - did we all know this? I certainly didn't until I happened to be listening to Richard Fidler's 'Conversation Hour' this morning. He was interviewing 3 sufferers of MS, and discussing how the disease impacts their lives, how they were diagnosed and what the disease actually does to the nervous system. It was a fascinating and moving piece of radio - link here.
Now MS is a thing I know a little something about as my mother is a sufferer. She was diagnosed about 13 years ago and while she doesn't have the classic Relapsing-Remitting MS, she's been getting slowly and steadily worse over time. The progress of the disease has been gradual and insidious, and I almost take it for granted - she can't walk far at all (ie - more than about 5m) without her walking sticks, she has to give herself intramuscular jabs of Avonex every week, she's on so many tablets she almost rattles - until I remember what life used to be like for her.
It really came home to me a year or so ago - Steeleye Span were out in Australia on a tour, 10 years after their last one. I took Mum to the concert back then for her birthday, having bought cheap tickets through the Student Union. We had dinner at Casa Asturiana on Liverpool St, then got held up enjoying flan and coffee before we realised we would be late, andhad to run, giggling, up George St to the State Theatre where we proceeded to boogey on down to the folk-rock genius of Maddy Prior and friends. Thinking about how 10 short years had reduced Mum's mobility so drastically was really jarring. She used to dream about holidays walking along Hadrian's Wall with friends, used to be an enthusiastic bush walker, and now she has no chance at all of ever being able to enjoy these things.
One of the topics discussed in Fidler's program was the fact that they (the boffins) still don't know what actually causes MS. They know that the myelin sheathing that protect the spinal cord starts being attacked by the immune system which causes damage to the nervous system, but they don't know what prompts the immune system to start acting in such a way.
And they don't know how to cure it.
There isn't an awful lot of research being done, and not many awareness or fund-raising campaigns. There just doesn't seem to be any interest in it, beyond the annual MS read-a-thon. One of Fidler's guests spoke of having mentioned it to an event-organiser friend of hers who simply said that MS isn't fashionable (dahling). It's not a disease that has recognisable symptoms, it's not fatal, and it (mostly) doesn't affect children. The fact that it creates a living hell for the 15,000 sufferers in Australia doesn't make the headlines or appeal to the wider community. It makes me so sad - I look at my mum and see how her quality of life has plummeted in the last 10 years. I look at other sufferers, most of them between the ages of 20 and 40 when diagnosed, in the prime of their lives, often with young families to support, condemned to a life of pain and uncertainty.
So. Damn. Sad.
So, to sum up: GIVE MONEY! If, like me, you have some extra dollars just sloshing around in your wallet (actually I don't, but y'know, you give till it hurts) and you need to divest of some it before 30 June, then click away and donate to the MS Society. You know you want to....
Now MS is a thing I know a little something about as my mother is a sufferer. She was diagnosed about 13 years ago and while she doesn't have the classic Relapsing-Remitting MS, she's been getting slowly and steadily worse over time. The progress of the disease has been gradual and insidious, and I almost take it for granted - she can't walk far at all (ie - more than about 5m) without her walking sticks, she has to give herself intramuscular jabs of Avonex every week, she's on so many tablets she almost rattles - until I remember what life used to be like for her.
It really came home to me a year or so ago - Steeleye Span were out in Australia on a tour, 10 years after their last one. I took Mum to the concert back then for her birthday, having bought cheap tickets through the Student Union. We had dinner at Casa Asturiana on Liverpool St, then got held up enjoying flan and coffee before we realised we would be late, andhad to run, giggling, up George St to the State Theatre where we proceeded to boogey on down to the folk-rock genius of Maddy Prior and friends. Thinking about how 10 short years had reduced Mum's mobility so drastically was really jarring. She used to dream about holidays walking along Hadrian's Wall with friends, used to be an enthusiastic bush walker, and now she has no chance at all of ever being able to enjoy these things.
One of the topics discussed in Fidler's program was the fact that they (the boffins) still don't know what actually causes MS. They know that the myelin sheathing that protect the spinal cord starts being attacked by the immune system which causes damage to the nervous system, but they don't know what prompts the immune system to start acting in such a way.
And they don't know how to cure it.
There isn't an awful lot of research being done, and not many awareness or fund-raising campaigns. There just doesn't seem to be any interest in it, beyond the annual MS read-a-thon. One of Fidler's guests spoke of having mentioned it to an event-organiser friend of hers who simply said that MS isn't fashionable (dahling). It's not a disease that has recognisable symptoms, it's not fatal, and it (mostly) doesn't affect children. The fact that it creates a living hell for the 15,000 sufferers in Australia doesn't make the headlines or appeal to the wider community. It makes me so sad - I look at my mum and see how her quality of life has plummeted in the last 10 years. I look at other sufferers, most of them between the ages of 20 and 40 when diagnosed, in the prime of their lives, often with young families to support, condemned to a life of pain and uncertainty.
So. Damn. Sad.
So, to sum up: GIVE MONEY! If, like me, you have some extra dollars just sloshing around in your wallet (actually I don't, but y'know, you give till it hurts) and you need to divest of some it before 30 June, then click away and donate to the MS Society. You know you want to....
posted by actonb at 12:18 pm
3 Comments:
MS is a terrible disease - one of Mr KR's family has it. Much sympathy for your Mum's condition and now I know where the link is I will make them one of my charities for the year.
I like to think that the MS Readathon is a way of educating the younger population - and that they are going to grow up to be the future scientists and doctors who ARE interested and motivated to search for a cure. I STILL want to do the readathon - and unfortunately my stupid full time job keeps me from one very real goal of reading books without feeling guilty because the more i read the more money goes to the MS readathon and research. A friend of mine was just diagnosed - she's 26.
MS has a cousin of sorts that I am fairly familiar with - similarly unpalatable, debilitating, tragic and just as rare - Myasthenia Gravis or "MG" (and it ain't no sweet ride cool british car). *He* was diagnosed with it at 22. But there is still so much we don't know about the human body and the way it attacks and defends - and I have hope. I know ye olde "hope approach" doesn't help in the short term or lessen how badly it affects your Mum's quality of life or the pain it causes you to have to watch her live her life in this way. But I get it. And you've raised awareness even with your post. Magic happens all the time (DO forgive me for quoting a very gay bumper sticker). If you don't like magic - insert serendipity. And so does science. Happens, I mean. Betwixt the two - so much is possible.
KR - It's nasty, but at least I've still got her around :) Is that selfish?
FBR - I would be quite happy to donate every time I read a book - that's a damn good idea. I might set up my own personal read-a-thon!
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