Estimating my Azheimer’s Disease Risk

estimating alzheimers disease risk genetic testing

Estimating Alzheimers disease risk: Testing my genes

Sadly, as many of you will know; my father passed away from complications relating to Alzheimer’s Disease and vascular dementia (mixed dementia) just a few days ago. He had been campaigning to raise awareness and funding for the Alzheimer’s Society for around a year, and was very keen that I should continue his work.

Dad made no bones about the fact that suffering from Alzheimer’s Disease was one of the worst times of his life. He lost his driving license, his independence, his creativity, his memory, his identity and eventually his life to the disease. I think you’ll agree that’s a pretty terrible way to go. And that doesn’t even cover the half of it. Hallucinations, paranoia, emotional, and angry outbursts are some additional things you might experience, or observe, but of course as the sufferer – you can’t always see that it’s the disease that’s causing these changes. In fact, to you, you feel like the only sane one; like the World is caving in around you and nobody else can see it. But you’re normal, you’re sane… you haven’t lost your mind. At least that’s your experience as the person suffering from the disease.

Alzheimer’s disease is 60-80% heritable, or so geneticists estimate. That means that your chance of developing Alzheimer’s disease is around 60-80% down to your inherited genetics. So, as my father has recently died from the disease it’s at the forefront of my mind that I may well be carrying the genes that predispose me to, or may even cause, development of Alzheimer’s disease in my later years. Perhaps this is a selfish way to look at it. But, I’m a scientist at heart so it’s certainly of great interest to me. The personal connection just makes it more real.

So, I’m getting genotyped. By this, I mean I’m sending off a saliva sample to 23andme in order for them to characterise my genes. Part of this process will involve the geneticists looking at a range of my genes that may (or may not) predispose me to getting Alzheimer’s disease (as well as a range of other diseases including cancers and diabetes). In 2-3 weeks I’ll have my results which will tell me if I have any genes that specifically raise my chance of getting Alzheimer’s.

So what if my results come back positive; that is that I have a genetic makeup that gives me a very high (or at least an above average chance) of developing the disease. Well, this will have been the case whether I know it or not, but then I will be armed with the knowledge. And is knowledge power in these cases? I really do believe it is, and that it will become more powerful as science progresses. I certainly am not a believer in the “what you don’t know can’t hurt you” doctrine. Quite the opposite in fact.

New data about using diet, supplements, exercise, pharmaceuticals etc. to reduce the risk of developing AD is being published all the time, and knowing what I will know, I can make the informed decisions as to whether I will incorporate these decisions into my day-to-day life. If my risk is increased, then I can increase monitoring efforts, inform my GP that I am at higher risk, and be more ready if cognitive changes do start to occur.

I’ll update you in a few weeks when I get my results back. Then I will know. And knowing is half the battle.

Gerry Anderson

A thank you

Gerry Anderson

Gerry Anderson

I just wanted to write a quick note to thank everyone who has been kind enough to get in touch with us over the last 24 hours. We’ve received hundreds of e-mails, read through thousands of tweets, and receives many dozens of phone calls. Dad would have been utterly astonished by the response of the public and the media.

The most overwhelming thing has been the fact that so many people have been so touched by Dad’s work. Not just in terms of entertainment during their childhoods, but into adulthood – altering career paths and generating new interests, that might not have otherwise existed. This depth of influence has been incredibly striking for us, and as a family we truly appreciate the time you have all taken to contact us and share your thoughts, memories, and experiences.

We intend to keep Dad’s memory and legacy going as much as possible, and I will be writing about a number of upcoming projects in the near future.

In the meantime, if you would like to honour his memory then please continue to give donations to the Alzheimer’s Society via our memorial Just Giving page at http://www.justgiving.com/RememberingGerryAnderson

Thank you again for your continuing support and kind messages – they really do mean a huge amount to us.

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Gerry Anderson has Died

Gerry and Jamie Anderson working with the Alzheimer's Society to launch Memory WalkI’m very sad to announce the death of my father, Thunderbirds creator, Gerry Anderson. He died peacefully in his sleep at midday today (26th December 2012), having suffered with mixed dementia for the past few years. He was 83.

Please make donations in his memory to the Alzheimer’s Society via this just giving linkhttp://www.justgiving.com/RememberingGerryAnderson

Below is an obituary kindly written by his fan club: Fanderson

Gerry Anderson has died

26th December 2012

Gerry Anderson, known the world over as the film and television producer of Thunderbirds, Captain Scarlet and Space:1999 amongst many others, has died at the age of 83.

On hearing the news the chairman of Fanderson Nick Williams paid tribute to him:
“To those who met him Gerry was a quiet, unassuming but determined man. His desire to make the best films he could drove him and his talented teams to innovate, take risks, and do everything necessary to produce quite inspirational works. Gerry’s legacy is that he inspired so many people and continues to bring so much joy to so many millions of people around the world.”

Anderson’s unique style of filmmaking influenced the imaginations and careers of countless creatives that succeeded him, and his productions continue to be shown around the world to new generations of fans.

Gerry was diagnosed with mixed dementia two years ago and his condition worsened quite dramatically over the past six months. Having already decided with his family on a care home for himself earlier this year, he moved in there in October.

Until very recently Anderson remained interested and involved in the film industry, keen to re-visit some of his earlier successes using the latest technology available. His last producer credit came in 2005 on New Captain Scarlet, a CGI-animated re-imagining of his 1967 Supermarionation series, which premiered on ITV in the UK. Most recently he worked as a consultant on a Hollywood remake of his 1969 series UFO, directed by Matthew Gratzner.

He also worked as a celebrity ambassador for The Alzheimer’s Society, helping to raise awareness of the disease and much-needed funds for the society.

Gerry leaves three children from former marriages, Joy, Linda and Gerry Junior, his son Jamie and widow Mary.

Fanderson will pay a full tribute to Gerry Anderson in FAB 74, due in March 2013.

Donations can be made to the Alzheimer’s Society in his memory.

Added at 7.14pm 26/12/12 – I just wanted to thank everyone for their incredibly kind messages of support, and for sharing their happy childhood memories – inspired by Dad’s work. I know Dad would have been blown away by the support, positivity, and kind words. I think the saddest thing would have been if he had passed without being noticed, but the response has been the total opposite. Thank you.

UPDATE: 27/03/2013 – A new website has been launched to celebrate Gerry Anderson’s legacy, and keep fans informed about new Gerry Anderson projects. Please visit the Gerry Anderson website.

alan watts

Alan Watts on Life and Music

Alan Watts Life and Music

Alan Watts was a fascinating 20th Century philosopher who brought Eastern philosophy to the West. He has recently enjoyed a resurgence through a few video clips on YouTube. I’ve recently come across a number of these with animations by Matt Stone and Trey Parker (of South Park fame), and have started uploading them so that more people can see them. I’ve also transcribed this video below in case you wanted to read the content separately.

In music one doesn’t make the end of a composition the point of the composition.  If that were so the best conductors would be those who played fastest, and there would be composers who wrote only finales. People would go to concerts just to hear one crashing chord; because that’s the end!

But we don’t see that as something brought by our education into our every day conduct. We’ve got a system of schooling that gives a completely different impression. It’s all graded. And what we do is we put the child into the corridor of this grade system with a kind of “come on kitty kitty kitty”, and now you go to kindergarten. And that’s a great thing because when you finish that you get into first grade, and then come on; first grade leads to second grade and so on, and then you get out of grade school. Now you’re going to go to high school, and it’s revving up – the thing is coming. Then you’ve got to go to college, and by Jove then you get into graduate school and when you’re through with graduate school you go out and join the World!

And then you get into some racket where you’re selling insurance. And they’ve got that quota to make, and you’re gonna make that. And all the time that thing is coming. It’s coming, it’s coming! That great thing, the success you’re working for. Then when you wake up one day at about 40 years old you say “My God! I’ve arrived! I’m there”. And you don’t feel very different from what you always felt.

And there’s a slight let down because you feel there’s a hoax. And there was a hoax. A dreadful hoax. They made you miss everything. We thought of life by analogy with a journey, with a pilgrimage which had a serious purpose at the end and the thing was to get to that end. Success or whatever it is, or maybe heaven after you’re dead.

But we missed the point the whole way along. It was a musical thing and we were supposed to sing or to dance while the music was being played.

Jennifer’s Choice: Increasing Organ Donation Rates

organ donation promotionI was touched this evening to see a new fan page on Facebook – Jennifer’s Choice. I’ve posted details of Jennifer’s story below:

Jennifer was born on 12th June 1985 with Cystic Fibrosis. The symptoms of the disease meant she would have a life that would last no longer than her late teens. As a child Jennifer was happy, bright and optimistic. She became an exceptional student and went on to complete a University degree, along with an MA. She always had an unfaltering fighting spirit and with the advent of improved medication, her life expectancy was extended.
But as predicted, her condition deteriorated and in October 2009 she was registered on the lung transplant list. After an 18 month wait, she received a double lung transplant. With much relief it was a great success and Jennifer felt she had been gifted a second chance. In the autumn of 2011 she was able to enjoy a very special day, when she married David, her boyfriend of 4 years.

But less than a year after the operation, the newly married couple’s hopes were shattered when Jennifer was diagnosed with lung cancer. She was told at this time that her donor was a middle-aged person, who smoked 20 cigarettes a day. By the time of diagnosis, the cancer had already spread through her body.

Jennifer maintained her fighting spirit throughout but inevitably, at 9pm Friday 24th August 2012, at home with her family by her side, Jennifer sadly passed away, aged 27.

Jennifer’s fighting spirit lives on and it has inspired us to create a positive and significant change. There is a real shortage of organ donors, 90% of people have already expressed their support for organ donation, but only 29% have registered. Doctors are having to use organs which carry an even higher risk in order to give those in desperate need of a transplant a chance. In the three year period from 1 April 2009 to 31 March 2012, 39% of lung transplants were from donors with a past history of smoking.

 

Our aim is to ensure those waiting for a transplant are informed of all factors which present a higher risk to their health and to make people in good health aware of what a wonderful thing it is to help save someone’s life and give your organs a second life. Think how amazing it would be for your lungs to enable someone to breathe or your eyes to allow someone to see again. Think how incredible it would be to allow someone to live.

I did not know Jennifer, although she was a close friend of a close friend of mine, so I have no direct connection to the campaign. However, the story struck me as so terribly sad – that a young woman should survive so much, only to be brought down by something which was not her fault. This may well be the nature of life, but this sort of situation is preventable.

If more organs were donated in the UK, then this would have been far less likely to happen as Doctors would have the choice to reject lungs from smokers, or other organs potentially damaged by the donor’s lifestyle. However, in the UK right now we have an “opt in” system. That means that the default setting is NOT to donate organs. In my view, this is such a foolish system… we know from endless psychology and behavioural economics research that the vast majority of people are too lazy to change from the default – whatever that is. Hence why we end up with magazine subscriptions we don’t want for years and years, after signing up for “3 free issues”.

In countries where an “opt out” system is used for organ donation – compliance is often near 100%. For example: Germany has an opt-in system – 12% donate organs. Austria has an opt-out system – 98% donate organs. And that comparison is a useful one, I think – not like comparing apples and oranges. Germany and Austria are similar in many ways including socio-economically.

I hope that campaigns like Jennifer’s Choice will start to build momentum and put pressure on the government to implement an opt-out system, where the default is that it is assumed that every person will donate their organs should they meet with an untimely death. I mean, what use is it for your organs to be incinerated or in a ditch, rather than potentially sustaining life for another human being. What a beautiful gift to give – far more than any amount of money and possessions left in a will could ever be!

So, please head over and join the page on Facebook – follow the campaigns progress, and help bring about an opt-out system for organ donation in the UK!