I feel sick and sad this morning
Footnote to my story in November called “Why don’t auckland hospitals work smarter rather than harder.” and the previous one The Hospital is the best place to be when you are sick, or is it?
My friend passed away this morning after an agonising battle with cancer. One has to wonder how much easier it would have been for her if she had received the treatment she was entitled to at the times she was turned away due to strikes and staff shortages. I’m sure she would still be with us today if she was able to receive the treatments and surgeries she was scheduled for.
Her husband is one of those nice old school Kiwi guys who listens to what he is told and didn’t want to rock the boat. He refused to fight through the management or the media to get the treatment his wife needed because he felt that was not the way you behave. Now he has lost his wife and soul mate too soon. We had to respect his right to be true to himself, but I’m not sure we have to accept the system that put him in that position.
My advice, if you are in a situation like that, where lives can be saved or prolonged and the bureaucratic penguins and the system is holding stolidly fast to this is where the line starts and if you’re not there anymore when you get to the end of the line, will the next patient shuffle forward, make a noise like someone’s life depends on it, especially if it does. People who go to the media miraculously get the treatment they need and sometimes before its too late.
We Kiwis need to stop being PC and accepting the bs that comes from our health industry. Note its not the wonderful hospital staff, they are put in an invidious position by the administrators, by the beurocrats and by the politicians who sleep sound at night and whose close ones are probably not getting turned away because “a registrar is off sick and the shift couldn’t run”. They are the ones who have to lie to the patients and their families when cost cutting measures, old fashioned systems full of lost paper files and ancient systems, and cost cutting means many people don’t get their surgeries, live or die in pain.
This person’s story is over. We won’t be going to the media or fighting because it is not what her husbands wanted. I respect that and much as it burns me, I will not add to his grief or risk creating feelings of guilt to him to make matters worse. He came from a generation who said yes sir, I know you are doing your best and genuinely trusted that. She may still have died, in fact probably would have, but she might have had a few more years and she certainly wouldn’t have suffered the degrees of agony of that she did over the last 4 months. We don’t do that to animals.
If you find yourself in a situation like this, make a noise, get your loved ones help, let the media know and as a country we have to get our government and administrators to invest in the new technologies that in the long run will cost less and save more lives.
Why don’t Auckland Hospitals Work Smarter Instead of Harder
3D Bioprinting
3D Printing is no longer news although I suspect most people haven’t heard of it yet. In fact there is a company within a couple of km of my office in Albany already successfully offering a variety of 3D printing services, incidentally called 3D Print. Another Aucklander, well known internationally in the 3D printing with RepRap is Vik Oliver, seen here with one of his machines.
When I heard that Richie McCaw was injured and after surgery was going to miss around 6 matches after having a titanium screw in his foot, my first reaction was, as most Kiwis, just what we need in Rugby World Cup year as he is such an amazing skipper and we want him there leading the All Blacks. Then I thought about so many other sports people who suffer injuries all the time given that they are putting their bodies on the line professionally.
Imagine a technology that rebuilds or repairs body tissue, bones, ligaments, even organs in vivo, using micro surgery techniques that mean people recover far more quickly, naturally and potentially therefore stronger than before.
Using the same types of technologies as conventional 3D printing, it will soon be possible to pattern and assemble, layer by layer, functioning living tissue, as well as non living substitutes such as ceramic and titanium according to Vladimir Mironov, an associate professor and director of the Advanced Tissue Biofabrication Center at the Department of Regenerative Medicine and Cell Biology, Medical University of South Carolina. He is also currently making waves about growing in vitro meat, something I have previously blogged about.
So this is a relatively new technology and I don’t know that it has been tested on humans yet, but the technology is already commercially available from companies such as envisionTEC.
Imagine the good this technology could do for people with problems from injuries, burns, through to the huge numbers of people who die for lack of organs for transplant.
The following video shows how bioprinters will be used in the long term. The technology will also be used to create human tissues which can be used for drug testing instead of using animals.
Of course if tissues and organs are made using material from the host, we can eliminate problems such as donor organ rejection.
Olmesartan and Recovery from Autoimmune Disease
The following presentation is fascinating. So many people suffer from autoimmune problems. Could it be that many of them can be cured using a subset of Vitamin D?
It makes sense that many bacterial genomes damage the immune system over time and incrementally shut it down. In effect microbiota block the Vitamin D Receptors from producing antimicrobials.
Professor Trevor Marshall has worked with over 500 human subjects and demonstrated reversibility of many autoimmune conditions including Lupus, MS, Type 2 diabetes and many more conditions, typically chronic inflammation conditions.
What is even more impressive is that as the inflammation receded, a host of other conditions that the subjects suffered from also disappeared. These included memory loss, obsessive compulsive disorder, osteoporosis, bipolar and even cardiovascular disease.
In their research they discovered a couple of very interesting points. One is that only 1,25 dihydroxyviatmin-D can activate VDR transcription, whereas Vitamin D that we can take as pills actually inhibit it.
Could this be one of the discoveries that will help increase our life expectancy and potentially cure people from many terrible diseases?
Your Ashes on Record
I’ve lost friends and a family member recently which has led me to think about what I would want to do with my ashes. We don’t often face our mortality and a number of topics have come up recently. For example, what happens to your social networking and web presence when you die. One solution I discussed in a previous blog was Legacy Locker, who can provide access to your records to anyone you want to access them. Do think about the consequences of this though, especially who you provide access to.
Another topic that I have pondered on is my funeral. No I’m not planning to die anytime soon. Hopefully I have at least another 40 years on this planet. But I would like to have control over at the very least, the music that is played. I have a few tracks in mind, like Santana’s Samba Pa Ti, which I love. I’d also like to have at least one of my own songs that I have recorded, but I am hoping that my best work is yet to come, so that may change.
I definitely plan to be cremated. I hate the idea of worms crawling through my bones. So what to do with my ashes. Well I think I’ve found the perfect solution. A company called Add Vinyly will press your ashes into 30 records containing 24 minutes of any audio content you want. Now you can not only have control of what’s played at your funeral, but you can be a physical part of the performance and any of your friends who want to can have a piece of you so to speak.
What do you reckon?
And When I Die
No I’m not talking about my blog, but it is relevant to the podfade. There is so much I want to write about. How thrilled I was about The Hyperfactory achieving their harvest plan and that Derek and Geoffrey are planning on coming back to New Zealand to share their knowledge and help others follow in their successful path. As you know location based services and mobile marketing are amongst my passions.
I would also have liked to talk about the Rex which set foot in New Zealand, just as I was bemoaning the difficulty of Kiwi innovators to capitalise on their ability; again an area that has been of great interest to me. Then of course there is the tentative success of the oil cap on the BP oil well. I have pondered much on Oceanic Dead Zones, whilst the BP accident helps extend them.
Two months ago I was faced with a family crisis. My father in law was told that he had somewhere between 3 days and 2 weeks to live. Life as I know it, pretty much stopped. Our close family was in shock, even though we knew it would come eventually. Before you offer condolences, he is still alive:)
Having developed a taste for tobacco while serving in the air force, 20 years ago he had a laryngectomy as a result of throat cancer. He didn’t take it lying down. He learned to talk again and picked his life up. He became involved with the Lost Chord Club and eventually became President, counselling others through their throat cancer journey. He also visited schools and let children look into his stoma, seeing that he had to breath through a hole in his neck, caused through smoking.
So for most of the last 20 years he was in remission, then the cancer returned and as often is the case 2nd time around, it was not going to be possible to treat it.
So my life and that of my family has changed dramatically for a while and many of things I have been wanting to do, I haven’t had time for. We spend as much time as we can with him, because once it is over it is totally over.
It strikes me that whilst we all know that from the moment we are born, we can be certain of one thing (I have blogged about people (such as some from Singularity University) are doing everything they can to avoid it) it appears that death is a given for each of us.
So we have been assisting with respite care, trying to help him maintain his dignity as he becomes helpless, and his confusion as to both why he is still alive and what will become of him when he dies. Will there be a place for him in heaven? Is there a heaven? These things worry him. He has never been a religious person, although he was a church choir boy many years back. He worries about his wife and what will become of her after he passes on.
We all worry about each other, how each is going to cope with the end. I wonder how the women of the family cope now, they look after him around 18 hours a day, partly because they want to and partly because there are not many people who understand how to look after someone with a hole in their neck, who can’t talk. If he had a shower and water got into his stoma, he would drown. If his neck valve leaks (and this happens from time to time) when he eats a few spoonfuls of his porridge, the food can leak into his lungs.
Anyway, things aren’t normal right now and no one can tell him what is next tomorrow, let alone for eternity. Two months ago he was told maximum 2 weeks. Two weeks ago we were told “a few days”. It took us a while to understand what he meant every time he woke up and asked “What’s going on?” We thought he meant Who’s here? or Is someone going to take me to the toilet? But eventually we figured out that he is asking, “Why am I still alive?”
So it seemed appropriate as I wait for my finger nails to toughen up again (for guitar) after washing the bathroom and shower, so I can do my latest Berklee Music assignment and then head back to the rest home after a work out at the gym (down to one a week because I go to the rest home straight from work) that today’s blog be about something more basic than singularity and the latest problems with iPhone 4. Once you break it down, we are just an essence in a body that peaks somewhere between late teens and mid twenties and then starts to die.
Sometimes all that matters is the people that are close to you and can give you comfort, and you them. When you break it down, we are beings in flesh and blood in a temporary home.
What the HAL?
I love the way Japan and Korea are developing robotics. I used to say that the Japanese were great engineers but not that great at innovating, I think that perhaps those thoughts should be banished to the dim past.
I’ve written a few blogs on robotics, such as about the plans in Korea to have a domestic robot in every household between 2015 and 2020, ironically I mentioned HAL9000 from 2001 A Space Oddysey in that blog.
The latest innovation greeting the media this week has been the new Japanese Robot suit from Cyberdine, also called HAL, but this one is a robotic prosthesis. HAL stands for Hybrid Assistive Limb and uses the faint nerve impulses when your brain tries to control weak or damaged limbs.
This technology has been under development for several years, but it looks like it is ready or the market, as demonstrated in this video taken recently in a Japanese hospital.
What seems remarkable to me is that this robot will soon be available for purchase in Japan for a little over US$4,000! This means that these devices will be accessible for less than the cost of an average surgery and could perhaps be of major assistance to people on waiting lists for hip replacement or other limb operations.
One of the great features is that the exosceleton, if I can call it that, supports its own weight, so isn’t an extra burden on the person wearing it. This offers people with disabilities an amazing opportunty to live and do ordinary, but also extraodinary things. For example during testing 2 years ago, Seiji Uchida, a quadraplegic was able was able to climb a mountain on the back of a climber using a HAL suit.
Of course this brings in the Six Million Dollar Man question. If this is what disabled people can do, what could able bodied people achieve with one of these?
Of course the military have been working on projects like these for a long time. DARPA have for several years been working on exoskeletons that can help people carry more weight, run faster and of course have much more strength when needed.
Other scenarios where these could be used would be in civil emergencies such as earthquake rescue, where immediate strength could speed the release of people trapped under rubble.
The immediate opportunity is to alleviate suffering of people with injuries or issues such as arthritis, but there are likely to be lots of people queuing up for the opportunity to become super people, or perhaps super heroes, or of course super criminals, but I don’t want to go there.
Day to day operations of emergency services could also benefit from this technology. In the hands of fire services, police, paramedics and others, this technology could be brilliant.
Legacy Locker passes all your web accounts on to your beneficiary
I read a story in this morning’s NZ Herald which doesn’t appear to be available online. It was about a new web site which people can use to pass on all their passwords and account details for everything they do on the web from your online banking to all your web sites, social networking pages etc.
This was something I hadn’t considered before from my own perspective, or from those I leave behind. There are of course practical issues, such as having access to my online banking accounts but also my blogs, the sites where I post my music, such as MySpace and Music Forte, and my social networking sites such as LinkedIn and Facebook.
The practical things are important because I would want to ensure that my beneficiaries have access to all my assets, but there are also the emotional considerations. Unless someone does something about it, my blogs and my social networking pages will remain forever. Personally I think it would be nice to leave a digital footprint behind, especially for my music, but also where people can remember me, almost like a legacy, where my own perspectives can be seen, rather than other people’s interpretations of them.
The NZ Herald story, which came from Telegraph Group Ltd, (which I also couldn’t find online) raised issues of the pain that it might cause to people left behind, when their loved ones pass away, seeing all their posts, photos and other net based activities, like footprints in the sand that people can see in time to come. It could be very painful.
On the other hand, I would love to be able to access information left by my forefathers. I have travel diaries from my grandparents and a small number of photos, but mostly their information is lost forever, or scattered, not shared, amongst my many cousins, uncles and aunts.
So the Legacy Locker service allows you to ensure that people left behind have access to all your accounts and can follow through on your wishes after you pass on. I don’t know how they find out that you have died, their must be a mechanism for that, but you have the ability to write an email that will be delivered to your beneficiaries after your death, so that they have access to all the information you want them to find.
It looks like they have all the systems you need including bank level security, to ensure that your data is safe.
They make a good point on their site that online assets have value. There may be areas of financial value, but there is also the intrinsic value of having access to photos that you may not have ever printed, music, diaries / blogs and traces of all your relationships, business, family and friends.
The pricing is also very reasonable, $30 a year, a flat fee of $300 and you can also have a free trial. I’m not so sure about the free trial other than being able to evaluate how it all works, but it is something I would probably do if I was going to sign up. Will I sign up, not at the moment, but maybe some time in the future, who knows?
While this blog is starting to get a good following, I would love to get more readers and encouraging me to keep writing. If you feel that my blog is interesting I would be very grateful if you would vote for me in the category of best blog at the NetGuide Web Awards. Note that the form starts each site with www whereas my blog doesn’t and is of course http://luigicappel.wordpress.com.
Thanks so much for your support:)
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