'Both My Sons Deserve to Live': A Mother's Plea for Quicker Action from the FDA

Reblogged from Health & Family:

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.

Read more… 1,598 more words

It is a genuine dilemma in this age of new-fangled "molecular" drugs, that some seem to work very well during their first human trials, but we have to wait years to get them to the public. Of course there is massive cost to consider in some cases, but I don't know about eteplirsen. Public health advocates can have a terrible time deciding if a few people can have an expensive drug vs. a lot of people getting a cheap one. For instance, how many doses of polio vaccine would you trade for one of eteplirsen? These are the realities of government budgets. I wouldn't like to do it, would you?  

I’m Everywhere I’m Everywhere [in the USA]

HowManyOfMe.com

There are people with the name Kay Walker in the U.S.A. How many have your name?

Since I’m Australian, the proportion would work out that there are probably 14 or 15 of us over here!

When I was on Facebook I had 7 Friends named Kay Walker. We used to wish each other Happy Birthday & Merry Christmas. I am keenly following the education and career of one of us who is a college student at a place oddly named [to me] Quinnipiac University & has a small photography business. My regular readers will know I’m also a keen photographer.

Kay Walkers of the world

On Google Plus I have a Circle titled Kay Walkers of the World with 6 members so far! At one stage when I was a health researcher and publishing regularly, I discovered two other Kay Walkers in academia, both of whom were also in health: one in nursing research and the other in allergy. I know of three MALE Kay Walkers, but none have joined me on any of the social media sites. Where are you, guys?

While I was researching some health conditions in Australia, a person with my name presented themselves for an assessment interview, so Kay Walker interviewed Kay Walker. Another coincidence was when I was registering for the local artists’ festival [SALA] as a glass artist and discovered I had already registered as a print artist! That was a bit scary!

The Cat Bed by printmaker Kay Walker

Lastly, there is also a TV director/producer in Australia with my name which explained a very strange incident where I was sent an urgent message to please contact someone on a TV show team in Sydney NSW. When I rang the number they were very puzzled to hear I was a health researcher from Adelaide, not the prospective producer they wanted to employ!!

 

Has anyone else had such amusing or alarming experiences with name-doubles?

By the way, although there are so many Kay Walkers, I have absolutely no problem with identity confusion! I know who I am. Who are those others??

Obviously lots of us die all the time, eg. there were at least ten pages of obituaries at http://www.iannounce.co.uk/United-Kingdom/23/Obituary/obit?_fstatus=search&keywords=Kay%20WALKER

We’re dying everywhere!

But I couldn’t find any new birth announcements- I think Kay is a little passe!

 

Happy to donate

I’m doing this to support Donate Life Week 2012 [19 to 26 February ] FilmLife Blogger Challenge, encouraged by the FilmLife Project.

Can't get far without!

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.

2. If you were to donate your organs, which one would you love to donate, and why?

All organs are equal in death, as far as I am concerned, but my preference if pushed would be to have my kidneys used. I believe that donating a kidney to a well-matched recipient might give someone the chance of a full lifespan, whereas without it they might only live a few years or months. When I was a child, there was a young girl in our street who was my age, but she had some kidney disease which made her very ill and often unable to attend school. She rarely appeared to play in the bush or ride our bicycles around the neighbourhood. Gwyneth seemed a sad girl, she looked as though she might have been in pain and was a real contrast in appearance to her pretty, rosy-cheeked sister. If only kidney transplants were available in the 1960s, she might still be having a good life right now. R.I.P. Gwyneth.

I have known two people who have had heart transplants and a stack of older people who have had corneas replaced. The heart transplants seemed rather traumatic for all involved, both men in their 40s with families and responsibilities. One of them recovered sufficiently after a lot of illness and complications to resume work with light duties while the other died about 12 months after the transplant. Heart transplants seem rather fraught, even for highly publicised people like Fiona Cootewho is alive and well 25 years after her first heart transplant when she was just fourteen.

Fiona Coote

Liver transplants seem like a marvellous idea, but I don’t know anyone who has received one. Given what I know about livers, I can’t imagine it is easy to transplant them, join them up to all the veins, arteries and ducts they need to work properly and then make them last. Donating a liver seems very generous but somehow sounds like a terrible risk for the recipient- although since they face eventual death with no functioning liver, a few months extra may seem worthwhile. Personally, I wouldn’t have a liver transplant- I’d just get palliative care for some months & pull the plug once I became unable to function at more than 50%. My impression is that most other people would be very happy to risk everything and take the transplant because some lucky recipients live for a long time afterwards. Let’s see what happens to Derryn Hinch.

Derryn Hinch recovering

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.

3. Who in your family would you need to talk to about organ donation, to be sure your loved ones knew your wishes?

As I have no close blood relatives [parents, siblings] and just my partner, Spotrick, in my life, there is no one to discuss my intentions with except my partner, and we have agreed that organ donation is exactly what we want. Easy for us! If my older cousins who live interstate and overseas even notice my death I’d be surprised and I don’t think they would assume they’d get a say in the fate of my organs!

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.

Donate Life Book

Dour musings

It’s a happy time of the year, Christmas time and the Aussie summer holidays and I am pleased to be quite cheerful this year and not “pretending in the hope of becoming OK”. I’ve tested the practice of putting a smile on my face so that I can make some “happy chemicals” that cheer up my brain and it works (a little), but it’s no good long term. I either honestly feel pretty OK or I don’t.
While I would have called myself “chronically suicidal” over autumn, winter and most of spring during 2011, I was never in danger of jumping off the cliffs at Hallett Cove. However, one friend did succeed in killing himself in autumn and two other people I knew died in November. One suffered in isolation, consenting to one last-ditch dose of chemo for his bowel-liver cancer which he should have skipped and had a good trip to the Barrier Reef; the other was elderly and died peacefully in his sleep as everyone had wished he would.

The death of my friend from cancer, only in his early 50s, affected me quite deeply. It made me think of what it would be like when I know the lights are going out for the last time. With Richard, there was probably another century’s worth of things he could have done in his life, as he had multiple enthusiasms and stacks of friends to keep him company. Yet the curtain came down on him very early and it’s like he never physically existed. How did he feel? I can only imagine the swift fade of sensations and the rushing “water in the ears” sound of an anaesthetic taking effect, but then no waking up. How would that be different? I guess it wouldn’t be. It’s just hard to think of my own personality and “liveliness” not being in the world. But that’s what will happen.

This should spur me on to fit a lot more in my life before I go. I AM doing quite a bit compared to winter, so maybe I’m on the up.

My excuse

OK- I haven’t kept up with NaBloPoMo this month, in spite of my ambitions. Life threw me a bit of a curler. Two people I knew happened to die on the anniversary of my mum’s death and I got all discombobulated.

One person died peacefully in his sleep after many years of heart problems, plus having a burst blood vessel in his brain in 2009. At that time the doctors decided to let him go peacefully but his son (who is actually my good friend, not the old guy) persuaded them that he was quite functional – running his own little computer network at home, chatting on Facebook to friends all over the world and staying in touch with his former singing students. So they removed the clots over his brain surface and patched him up with metal plates. He was quite OK for an 81 year old, until he went that Friday night.

My friend of only 52 who died, had been quite close. He was the partner of my best girlfriend for about 20 years and they only split up 2 years ago. He was one of the happiest, healthiest people until he became depressed about 5 years ago. I think it was his “immovability” that broke them up as my friend was jibing at him for being “lazy”. My impression was that their business troubles (caused by old-fashioned local council regulations) were so deep that my girlfriend didn’t see the depth of her partner’s distress. Very sad all round because he then left the state and I couldn’t contact him. Apparently, shortly after he left he started having the health problems that eventually killed him. In spite of his great eating and fitness habits, he got bowel cancer which spread to his liver.

His wake (no funeral), was a tribute to his life, but was also sad for me. There were reminders of his happy life everywhere- his scuba diving gear and underwater camera, his racing bicycle, motorcycle & jet-ski. There was a continuous DVD playing of photos from all his adventures both overseas and in Australia. I thought that the most exciting thing he had done was when he was part of a BMW advertisement that was being made in the Arizona desert. He got to ride with a heap of others in a mile-wide line across the desert, with the ad being shown all over the world. It was great to visit, as he cooked wonderful food, always using the best ingredients and generally spiced up with a mixture containing chilis. Some people at the wake speculated that all the chilis might have produced his cancer, but my money is on his extensive exposure to high-octane fuels during his motorcycle racing & playing with other toys. We’ll never know- that’s cancer for you. Too sad.

Another whale stranding

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.

Macquarie Harbour showing narrow entrance

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.

The mighty Franklin River

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.

Ocean Beach & the Roaring Forties

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.

Tasmania, pimple in the Southern Ocean

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:
http://www.scoop.it/t/whale-wonder/js?format=square&numberOfPosts=3&title=Whale%20wonder&speed=3&mode=normal&width=300

Day 9 NaBloPoMo: What happens when I die?

I nicked the prompt for yesterday as I didn’t fancy the lying one- it was too multifarious in its implications! Also, CynicalGirl has just posted about getting older on her blog and that’s what happens before you die!

She seems to find the physical changes the most noticeable, involving loss of function and pain, but I don’t notice this aspect at all! I was a sickly child and teenager- eczema, asthma, bronchitis, pneumonia, ambulances, hospitalisations, migraines from the age of ten, hand dermatitis. Dreadful time- and I rarely felt happy and child-like. I loved to run about, ride my bike, swim in the ocean, build cubby houses, balance on the fence, swing for hours in a homemade swing, play hide and seek in the semi-jungle near our house, do gymnastics at school..all sorts of fun physical things. But only when I was well enough- and if I did any of these things too hard, the asthma would get me- they didn’t have puffers or anything then- I just had to sit and gasp for an hour to recover.

So I certainly find my current age a lot healthier- and at the moment, happier than my childhood. The asthma has made a resurgence this year- something to do with the weather and multiple pollens, which are tickling up all the hayfever sufferers as well. I haven’t got any severe physical limitations and my muscles all work well, my joints have had a few minor injuries but are quite flexible, I have had a lot of tendinitis in my feet in the past, but that is fixed by not walking on hard surfaces wearing shoes with no heel-backing. I can walk, run, swim, bend and I even still like to climb trees!

Generally, my physical health and abilities have improved with age and I enjoy that! I’ve always had a crooked spine since getting “schoolbag scoliosis” in my early teens- we had to walk across town a few miles every lunch tiime to get to the old classrooms at our primary school, because the highschool was only half built! We walked all summer, carrying schoolcases full of books (10 lbs or more) from one arm or the other (no backpacks). I only weighed about 28kgs when I first went to highschool, so 5 or 6 kilos of books on one side was quite a load for a growing spine. I’ve had sciatic pain at various times and to varying degrees since my late teens as a legacy. But I have a routine of strengthening exercises that I get back into if it hurts now. Then I’m fixed in a few weeks. I can also walk for hours, uphill and all, without ever getting asthma- in fact I’ve taken walking holidays where we covered 10 to 20 kilometers a day over quite mountainous terrain, eg. Corsica, the Appennines, the Pyrenees both French and Spanish sides) and the Cevennes. I can’t think of any activity I’d rather do on holidays- if I had enough cash to take any these days!
I’ve never worried much about weight gain most of my life, although since it was pointed out to me I was underweight in 1986, I consciously tried to eat more as I thought it might help stay healthy in later life to have more padding in reserve. However, once I got used to eating more, I just kept eating like that even when I wasn’t exercising much, so I’m just at the upper limit for my height now and should lose it according to my doctor. I told her I’m only good at gaining, not losing!

My skin problems- eczema and a horrible blistering hand dermatitis, disappeared before the age of 18 and I don’t really get much of any skin problems any more- a few little blistery bits on the palms if I get too much water and detergent on them. My migraines left me dramatically at the age of 34 and immediately, I started to become very depressed (or the depression emerged from behind the migraine)- who knows- they both involve serotonin imbalances! It’s better to be rid of the migraines- so unpredictable and temporarily disabling- ghastly condition- wouldn’t wish it on my worst enemy! I don’t even have many ordinary headaches any more- fingers crossed!

My appearance is not something I’ve ever liked- although photos of me as a child and young adult don’t look too bad now! Although my hair has hardly greyed yet, it’s not the golden blonde colour it was in my twenties any more. My skin, being very fair hasn’t done very well in the hot Australian sunshine and I have suffered the ominous heap of severe sunburns that predispose towards skin cancer. However, I seem OK so far- my skin is just thinner and more wrinkled than it should be. It damages easily on my arms and hands- a slight bump and it bleeds- but I clot quickly, so I don’t really care.

My face has gone rather pouchy and puffy in places with age, which I don’t like, but at least I can still smile and laugh with all parts moving- better than the botox junkies! I’ve never worn makeup since my early twenties, so I can’t cover or enhance my features as I’m allergic to most cosmetics, especially around my eyes. SO I try to forget what I look like- there are far more things in the world!

I certainly don’t feel very old and can still identify with many teens who are going through various stresses in life- I can be more objective about the problems, but still empathise with how it makes them miserable. Maybe I feel between 25 and thirty at heart- difficult to say from this perspective. But I don’t feel like a stodgy old middle-aged woman as the stereotype would have it! I don’t dress like one either- which can be a problem in some company, but mostly I cope OK and find myself being a little scathing when friends act and speak like real 60-year-olds are supposed to! Maybe I feel less appropriate as a 58 year old because I haven’t got the trappings of most- I’ve never had kids, so there are none to produce grandchildren for me to dote on. This is starting to happen with lots of people I know, some of whom have been grandparents for 20 years now! Yikes! Do kids make people age more by making parents “separate” from them culturally?

So now I am more than halfway towards death- I estimate I’ll live to around 90 unless struck down by accident, a heart attack, stroke or cancer. I’d like to live to over 100 as I have so many things left to do- I need to get a whole new career so I can earn money for retiremen and travel because I sure haven’t got that now.

I think that when I die I will just fade from consciousness- maybe if I’m not already in a coma, I’ll know I am dying. I think it will be like inking into a general anaesthetic, but more slowly. I believe that after death I will be an inanimate pile of flesh and bones, suitable only for composting, if that’s allowed then. Parts of my body might be of interest to science, so I’ll offer that soon, but mostly these days, bodies are not required for medical teaching or research and most bodies are rejected.

So if I’m buried, I will slowly rot away, people will forget me and my molecules will appear again as stardust, millions of light years from now.

I don’t believe in a soul or spirit- just a brief maintenance of memories of me by other people- if I still have enough surviving friends at the time!