Austin and Max Leclaire are brothers. Austin is older, Max is younger. Like most siblings, they have many things in common and just as many that set them apart. For now, though, their strongest bond is over something they share — Duchenne muscular dystrophy (DMD), the most common lethal genetic disorder among children. Duchenne’s hallmark is increasing muscle weakness that eventually makes it hard to breathe and confines kids to wheelchairs, which is where Austin finds himself these days.
Just gathering my wits at the moment to make a blog post. I managed to get through 2012 with a few wobbles in the middle surrounding mis-haps in the arts and the inability to intervene in the fate of a beautiful cat. Around Christmas things were better than the previous year due to a win in the arts, brought swiftly to earth by an abrasive encounter at a pre-Christmas party.
On the upside, I managed to recover from the abrasive encounter with the support of dear friends and family, plus juggling my pills and vitamins! Currently I feel pretty good and I’ll do my best to continue along this trajectory.
Several things lying around the house (never tidy, but usually not a pigsty) have reminded me that reading has been a good tonic in the past, so I am glad to have a large pile of reading to look forward to this year too. Sonia Faleiro‘s book Beautiful Thing. Portrait of a Bombay bar dancer, is still sitting on the edge of the coffee table, reminding me how surprisingly moving some books can be. I was captivated by this tale of the knife-edge existence of a young woman with the “ambition” to be a genuine dancer, not just a roughly used barmaid. Convinced that her life was quite positive compared to others in India, she made me realise how different circumstances shape different personalities and how everyone has their own frame for their dreams of a “better life”.
While there is nothing in my “to-read” pile that promises to be as inspiring as that book, there are plenty that will keep me occupied with mayhem and mystery! eg. Michael Connelly‘s The Black Box. He’s always a good read.
Spotrick gave me for Christmas a little book of poems titled I Could Pee on This and other poems by cats.(Author Francesco Marciuliano). On the cover is a cheeky ginger & white kitten who looks similar to our Bendix. The contents are hilarious and are good cheer-ups if I’m feeling a bit meh. Here’s the beginning of “Unbridled love”:
I knead your chest with my sharp claws
To show you my affection
I bite your arm and don’t let go
To show you adoration…
That is sooo characteristic although I wish there was something I could do about the biting! My forearms sometimes get gory teeth-marks from those “adoring” chomps- ye-owww.
Books are generally for bedtime reading for me, whereas I often get occupied with online courses during the day while Spotrick is at work. While in 2012 I was finishing my Masters degree, with that merely needing some corrections this month, I’ll have more time to concentrate on other things. Last year I did some online courses through EdX and Coursera including “Listening to World Music”, and “HarvardX: PH207x Health in Numbers: Quantitative Methods in Clinical & Public Health Research” , gaining course credits that could be used in real life if I wanted that. Several other courses I sampled, but didn’t complete formal assessment were Computing for Data Analysis (4 weeks of learning to progam in R), CalTech‘s Machine Learning and Community Models of Public Health . I have just started “Economics for Scientists” as I think it will help me understand more about health economics and the political economy of health, with the hope of enrolling for a PhD connected with those later in the year.
Incidentally, I was stunned to hear of the death of the man who practically invented the “political economy of health” . Gavin Mooney was murdered in Tasmania, along with his second wife Del Weston, whose son from a previous marriage is being held in connection with their cruel slaying. I only met Gavin late last year at a seminar and he seemed a great believer in making the best health facilities available to the most disadvantaged people. He was a lovely guy, and was obviously held in very high regard by people throughout the community as seen by the tributes in Melissa Sweet’s Croakey blog.
Not ruminating about things like the previous paragraph is something I have to develop this year and I have become sufficiently motivated (I think) to get back to some of my art & craft activities, like knitting and quilting. I meant to make some cushions for several friends for Christmas, but time flew by too fast while I was finishing off the degree. Though Christmas is almost a distant memory, I’ll keep going on the cushion project, starting with a log cabin pattern in greens for a friend who has an unusual green leather lounge suite.
These fabrics are in the mix and I am putting my new electric scissors to work cutting the strips just right as my wrists and thumbs are wrecked for working with manual ones.
There’s a lot of fabric hanging around here that needs to be made into clothing as well, but I’ve been very slack on the sewing for many years- I can’t get moving on it. This year I’ll get out some projects and see what happens- maybe inspiration will stay with me for a while. I really like these bright, lightweight cottons for making summer dresses and tops:
The garden is starting to look more lush than it has since we moved in, largely due to Spotrick’s efforts in tidying up old plants and pots. I’ve also been blitzing the plants with plenty of fertiliser and misting water under the larger ones on hot days. My ambition is to almost obscure the courtyard walls!
Shai Coggins’ blog reminded me that I have read quite a pile of books this year that I should list, even if just for myself. If you have read any of these and have an opinion, please comment!
- Nonfiction. Them and Us: Changing Britain – Why We Need a Fair Society Will Hutton. This book applies equally well to the Australian scene since the Global Financial Crisis and is a big influence on how I now view the political economy of public health.
- Nonfiction. David Harvey. The Enigma of Capital: and the Crises of Capitalism. This book was the basis of a pre-conference workshop on the Political Economy of Health before the international Public Health Association meeting in Adelaide in September 2012. It convinced me that I’m on the right track with my lack of capitalism in its present form ever leading to fairness in the distribution of resources compatible with good health in a nation. All capitalism depends on gambling that the small amounts of money held by “lesser” people can be collected together by crooks on the stock market to increase the large amounts held by people who consider themselves “the bosses” of the rest of us. It can’t keep happening as eventually the poor run out of resources, get angry and disrupt the system, or the rich find there is little value in their cash because workers are not producing anything more for them to buy with it. They can then either stockpile wealth to absolutely no avail or start financing jobs for the unemployed so the economy can start moving again. Have I convinced you? Anyway, I could rave about this forever, knowing absolutely nothing about economics!
- Jo Nesbo The Redbreast. A horrific Scandinavian thriller, as are the next four.
- Jo Nesbo The Leopard
- Jo Nesbo The Devil’s Star
- Jo Nesbo The Snowman. These are so well-written I couldn’t put them down.
- Henning Mankell The Troubled Man. Detective Kurt Wallander has turned sixty and thinks he is succumbing to the dementia that ended his own father’s life. Meanwhile he is struggling to help solve the mystery of a murdered naval officer.
- Peter Hoeg The Quiet Girl. Odd but thrilling, with a young girl kept apart from others by an apparently obscure group of “nuns”, helped by a strange Bach-loving clown. There are touches of magical realism about the tale but it all hangs together in the end
- Camilla Läckberg The Ice Princess: The body of crime writer Erica Falck’s childhood friend is discovered, wrists slashed, in an ice cold bath. Was it murder or suicide? The investigation leads her to a community on the brink of tragedy.
- Camilla Läckberg The Preacher: Twenty years ago, two young women disappeared in Fjällbacka – now their remains are found, along with a new victim. As Patrik Hedström works to solve these murders, do the dark secrets of a local family hold the key?
- Camilla Läckberg The Stonecutter: When a little girl is found in a fisherman’s net, the police realize it was no accidental drowning. Patrik Hedström investigates the death of a child both he and Erica knew well.
- Hakan Nesser – but can’t remember the title- think it’s different in Australia than the USA. But it’s another crime thriller.
- Yrsa Sigurdardottir Last Rituals Set in Reykjavík, this thriller concerns the murder of a student who appears to have odd symbols carved into his chest linked to ancient folk tales.
- Martin Walker Black Diamond. Policeman “Bruno” Benoit Couregges is on the trail of truffle merchants who are rigging the price of their expensive finds in French provincial markets.
- Martin Walker The Crowded Grave. I loved the description of the French countryside in this mystery about a modern murder victim concealed at an archeological dig against the suspicion of local cross-border terrorism.
- Non-fiction. Ted Nield Supercontinent: Ten Billion Years in the Life of Our Planet. About the history of the major tectonic plates that cover the earth and how we can see the ancient links between them by matching the minerals and landforms at the break-apart sites.
- Non-fiction. Simon Winchester Atlantic: Great Sea Battles, Heroic Discoveries, Titanic Storms & a Vast Ocean of a Million Stories. I skipped most of the battles etc. & concentrated on the accounts of how the Atlantic is being widened by the upwelling of volcanoes along the mid-continental ridge and the currents that carry whole species to unusual destinations on its shores.
- Nonfiction. Richard Dawkins. The Ancestors’ Tale. This gave me a really clear view of evolution by tracing the origins of all living species back to where they branched off from their closest genetic relative on the evolutionary tree. The explanations for the sometimes bizarre separations of different species or varieties of animals and plants from each other by geological changes, such as continental drift and tectonic plates and climate change are quite revelatory as well. One of the best books on genetic evolution I’ve ever read- much better than all the ones that start with a single cell and come from past to present!
- Geraldine Brooks Caleb’s Crossing. The Pulitzer Prize Winner’s novel of early America- Caleb is the first Native American to attend Harvard University, after being brought up quite traditionally on the site of modern day Martha’s Vineyard.
- Lars Kepler The Nightmare. Detective Inspector Joona Linna investigates the recovery of a young woman’s body from an abandoned yacht drifting around the Stockholm archipelago. Her lungs are filled with brackish water, and the forensics team is sure that she drowned. Why, then, is the pleasure boat still afloat, and why are there no traces of water on her clothes or body? The story involves international conspiracy and crime on a horrific scale, not easily relatable to the original death.
You can see by this selection that I’m a great fan of modern Scandinavian crime fiction, the history of the planet and the relationship of economics to health- what a weird mix eh?! What’s your mix look like?
I’m doing this to support Donate Life Week 2012 [19 to 26 February ] FilmLife Blogger Challenge, encouraged by the FilmLife Project.
My favourite slogan has always been “Don’t send your organs to Heaven because we need them far more down here!”
Previously I have recorded on my drivers license and registered online that I am willing to donate any body parts that might help others towards health, when I die. At 60, I could realistically die any time, although I am likely to live quite a bit longer, given my genes and if I am happy [rather than depressed]. If I get to 95 as my father did, there may not be much of me left worth sharing! However, if I’m struck down by a car or sudden fatal illness, most of my organs should be good for someone or something.
Obviously I’m not a young person, but hopefully some young people will read some of the blogs in the project and sort out their organ donation intentions while they are young and can talk with their families and loved ones. My partner and I have discussed this and we both agree that organ donation should be our fates after death. We have no qualms about having life-preservation machinery turned off if we have a dire prognosis and we have no close relatives who believe in burying intact bodies after we die.
I am constantly amazed by others who have strange Christian beliefs concerning the intactness of their bodies for admission to their “Heaven”. I thought Christians believed their SOULS went to “Heaven”, not some physical representation of their earthbound body and I fail to see how a soul could have mass or occupy space! It must also be difficult for other faiths, such as Judaism and Islam, to donate organs, since they believe the intact body must be committed to the ground as quickly as possible. I have no idea what Hindus and Sikhs believe about organ donation since they traditionally burn corpses in funeral pyres. Does anyone know if they are allowed to burn a body without its internal organs?
Since Buddhists don’t believe an intact body is necessary for the soul to pass to its next life in the journey to Nirvana, I assume they are fine with donating body parts, as would be the Tibetans who use Sky Burial. There is no point in believing in only giving intact bodies to the vultures as they’re going to tear everything apart in order to eat it!
I don’t have any belief in the after-life, any sort of “Heaven” or “Hell”, nor even a belief that I have a soul, so none of these rituals surrounding my death bother me. My preference would be to have compost made from any left over physical body after my death, while my “self” would merely cease to exist, except in the memories of my friends. Frightening, but that’s the deal, I believe!
Answering the FilmLife questions:
1. What’s your take on or experience with organ donation, and why did you choose to take part in the FilmLife Blogger Challenge?
I chose to take part in the Challenge in the hope that some readers might discuss their own beliefs and decide that organ donation would be a good thing. Even if people decide they could not donate in the present, maybe the seeds of an idea will be planted, for later germination.
Incidentally, I think he deserved his chance with a transplant as he had been an alcoholic due to mental health problems [as with most people addicted to anything]; he had given up drink and cleaned up his life and body in readiness for the rare gift of a suitable organ.
You can read all about the FilmLife Challenge at: www.filmlife.com.au so that if you’re interested in submitting a film blog, you can get involved.
If you also blog for the challenge, make sure you Tweet your blog out using the hashtag #filmlifeproject - and FilmLife will retweet via their Twitter account, @filmlifeproject.
Upon opening the lappy this morning, top of the news list was this: Rescue efforts continue for beached whales
Basically, a pod of sperm whales became stranded on some huge sandbars at the entrance to Macquarie Harbour on Tasmania’s wild west coast. You can see how narrow the harbour entrance is, plus sandbars are visible even on the Google map! The sandbars exist because this is the outlet of the mighty Franklin River- the one conservationists have fought so hard to save from the hydroelectricity schemes. Ironically, one piece of conservation is contributing to another species’ bad fortune. Nature does not choose it’s champions nor victims using logic or reason.
If you look on Google Maps, you’ll see that the Franklin River is huge and deep, ending in the monstrous Macquarie Harbourwhich has various deep, navigable channels. I imagine that the current pod of sperm whales was planning on steering themselves up a nice channel and investigating the nooks in the deep harbour.
Other whale pods had probably taken some great excursions here and reported to the whale-folk back home. This time, not so lucky and some of the family became beached. The reporter said the whales were in good condition and will probably be refloated in 24 hours. I’m not so sure, looking at their mouths, but we’ll see.
The strandings on adjacent Ocean Beach (north of entrance) are quite frequent. It is a huge long, straight beach, continually facing the Roaring Forties, blowing in unfettered by any land after Madagascar.
It is pretty much continuous and I imagine that whales could easily be pulled out of their intended route and into the mass of waves running towards shore. I’ve notice the torrent of waves building up more than a kilometre from shore.
When I visited Ocean Beach in 2009, the wind was blowing hard as usual, there was a certain stench of rotting mutton birds and fish, but no whales or their carcasses. However, people who live in surrounding towns and villages are used to strandings so I think they probably happened long before humans arrived.
Why do whales strand? Zoologists and other scientists concerned with currents and climate change have many theories, none of which are easy to prove in the short term. Some say that whales’ navigation system is disturbed by an illness, pollution or the earth’s changeable magnetic field, causing them to go off course or miscalculate the position of a dimly remembered shoreline.
Others say that Ocean Beach, on the “tiny” island of Tasmania within a vast Southern Ocean, is only a blip iin a big space, so sometimes the whales hit the island merely by chance. I don’t know what is believable about any theory on this , but as a soft-hearted human and conservationist, I find it worrying when these wonderful, lumbering animals meet their end during the prime of life.
A ScoopIt show integrates this blog post with other news about whales and conservation:
Although there was no such thing as a “greenie” when I was a kid, I think I’ve had a touch of green all my life.
I first became upset about deforestation when I heard that local farmers/ranchers were chopping down the Amazon rainforests and clearing them to graze cattle. I can remember reading about it in Readers’ Digest when I was six- although I mispronounced the river as “A-may-zon”, until I heard the word again at school about 3 years later!
I could understand that the native people of South America slashed and burned a small patch every year or two so they could grow a few crops, but I was quite frightened of the idea that the forests were just being laid waste to graze cattle and replanting rough grasses.
Obviously, this trend has accelerated and spread to the rainforests of other countries, eg. Indonesia, where they are plundering the rainforest to plant disgusting palm oil for consumption and export. It’s certainly not the cheap product it is touted to be, as we are paying invisible millions of dollars for the loss of the forest habitat. Rare animals have been pushed near to extinction by the mindless land-clearance, eg. orang-u-tangs.
Michael McCarthy tells a sorry tale in The Independent [Friday 04 November 2011]. He visited the African country Burkina Faso, which was formerly a French colony named Upper Volta. There the inhabitants have used ALL the rainforest to fuel their primitive cooking fires, making the country into a barren, dry wilderness with little potential to support plants or animals. Yet their population is increasing rapidly. If only someone would help Burkina Faso to leap into the 21st century with sustainable energy generation, plus educate the people to look after the country they have, which is roughly the size of Britain. In the blog “Music Cycles” there is some really engaging information and photos of the dry landscape, eg. one of the group rides a bicycle across a bridge where there was once a river;
We are destroying the planet to feed the current humans but leaving nothing in reserve for the next generations. I shudder to think of millions dying from starvation or disease because they cannot obtain proper nutrition.
Rethink you multinationals who finance local companies or towns to clear their land for your mass-produced but nutritionally harmful foods, such as palm oil. Rethink, you bankers and investors who are buying into this madness. Rethink, ordinary consumers who eat all the prepared foods containing ingredients like palm oil. You will all live longer and help save the planet by preparing your meals from fresh ingredients, obtained from nearby farmland.
Let’s have some change! If I can pretty much avoid packaged, supermarket food [like biscuits, pre-mixed sauces and packs of flavoured noodles], so can anyone else. It doesn’t hurt and everything I eat is full of flavour!
Save the planet and lengthen your life, all in one go. Go green.
The US State Department has some basic information and statistics on Burkina Faso. Take a look and educate yourself. It could be quite sobering.
Coumarin-derived warfarin was first used as a poison for vermin. It causes death by making the rat bleed to death internally- especially it’s brain- so it dies of an internal explosion! Errgghhh!!
The anti-clotting properties of processed coumarin were discovered from investigating the illness and death of cattle which had eaten moldy sweet clover. In the silage heap or hayshed, Sweet Clover can be fermented by moulds to become the active drug, di-coumarol, common name warfarin and various brand names such as: Coumadin, Jantoven, Marevan, Lawarin, and Waran.
Farmers and vets discovered that only the cattle who ate mouldy sweet clover, rather than fresh, came down with Sweet Clover Disease. Vets noted that some cattle nearly bled to death from minor surgery, such as castration and others became very ill, some spontaneously hemorrhaging, after eating feeds based on this sweet-scented clover. Scientists experimented with sweet clover extracts and various moulds in the University of Wisconsin laboratories until they managed to manufacture the substance that made the cattle sick. They named it ‘warfarin’ after their research fund, WARF, for Wisconsin Alumni Research Foundation.
Warfarin has become a very popular drug since introduced in the 1950s and only during the last decade have chemists synthesised some alternatives. The new anti-coagulants obviously must have warfarin’s useful properties, but they are considered to be a lot safer than the original because they aren’t as easy to overdose on. Warfarin is quite a bother for people using it, and their healthcare workers, because the level in their blood must be kept within a narrow range, If not, you will either clot (and then have a blockage causing a heart attack or brain stroke) or bleed internally (you could bleed into your brain, giving you a different type of stroke, or your lungs might bleed). If you are on warfarin you will either attend a clinic where your clotting rate is measured regularly or you will test yourself frequently at home.
The newer anti-clotting drugs are rather expensive and are not used widely yet. Some people might have heard of Dabigatrin, Ximelagatran, Fondaparinux and Idraparinux. Doctors are hoping that the new drugs will replace warfarin but it depends on whether they have only minor side effects or they do bad things to your liver.
I’m sure no one else ever blogs about this sort of stuff, but warfarin just happens to be one of the drugs I am researching for my Masters in Public Health dissertation AT THIS VERY MOMENT! So when I saw the ingredients of my new hand cream listed coumarin I thought- aha, here’s something I might need to know something about. And off I went!
By the way, the coumarin in handcream and perfumes is NOT harmful. Coumarin is merely a sweet-smelling substance that occurs in several plants including clover and tonka bean. The blood-thinning properties only occur from processing in a silage heap or, preferably, a laboratory. So don’t throw away your lovely smellies yet!
Today was a bit deadly to blog about, but anyhow… I did get a fair bit done on my health economics assignment. I was exploring materials on the estimated costs of prevention campaigns against obesity and cardiovascular disease. Most of the studies done are of older people who already attend their GP with a risk factor or early disease- they already have high blood pressure, obesity, high bad cholesterol levels or diabetes 2- or a combination of these. The researchers just look at the costs of giving them various drugs and using verbal information to encourage them to eat more wisely and lose weight. I’m much more interested in the primary end of prevention, where young children and their families are encouraged to eat wisely from the beginning and to make exercise a natural and enjoyable part of their lives, so that it doesn’t seem like a chore later in life.
There are lots of recommendations and suggestions from the World Health Organisation (WHO) and FAO on primary prevention, but I haven’t heard of any great implementation efforts in Australia. I just came across a Collaborating Centre for Obesity Prevention at Deakin Uni, but I’d never heard of it before- which is a bit odd since I’m studying public health in Australia already.
This piece could well go in my health blog. My overall view is that our national governments need to incorporate healthy exercise into the national healthcare programs, putting as much emphasis on getting people to participate from early childhood as they do on other things. How would we feel if exercise was given as much funding as GP visits, hospital admissions, drugs and pathology tests!? It seems a bit odd at first encounter, but to me its a logical transition- let’s see someone taking some steps in this direction.