When I was young I used to love poring over a particular cartoonist’s work.
Me: and the rest of the nation. Carl Giles was not a political cartoonist: he observed people. Each cartoon was very funny indeed: but it also had the charm of being full of small details. You could stare at a Giles cartoon for ages and still be surprised by something new.
His most famous cartoons concerned an extended family. Every element of the typical clan was there: the poker-thin po-faced aunt; the battleaxe granny; the long-suffering mother, laissez-faire dad and the ground-hugging urchins. Giles summed up British life in so many households for almost four decades.
If you have never seen his work it is time to take a look here. He depicts this extended family, with all its generations and foibles, with the utmost compassion and gentle humour. Dads and Grans maintain an uneasy peace, kids scheme to come up with ever more devilish plans which involve their grandmother, long-suffering aunts and their niece’s boyfriends share living space.
Even today – or maybe, especially today – that’s the way it is here.
Tomorrow my son has a landmark event: he makes his First Holy Communion. I am uncomfortable with these high-profile occasions but it’s ok: because Felix will have his grandmother and grandfather, aunt and uncle and three cousins in the church, as well as his immediate family.
We will have an extended feast afterwards, for an extended family, in honour of two of its smallest members. Everyone has something to contribute, and no-one will have to do too much work.
Being part of an extended family is rather like having a very good cricket team.
There are those of us who can run fast to catch a ball heading for the wicket. There are those who can hit a ball off the pitch. And then there are those consummate fielders, waiting to catch any eventuality before it lands and causes any damage. With so many, most eventualities in life are covered.
And now the extended family has just become even more important, according to a BBC Radio Four programme, Crossing Continents.
It seems some time in the early 1700s, a couple left the Basque region, headed for the New World.
They landed safely, and came, in time, to settle in the area near Medellin, which is surrounded by a brood of little villages nestling in the Andes.
And they had a family which grew, and grew, and grew.
Of course, nobody noticed it growing, and relationships were forgotten and before you knew it, there were quite a few descendants of this pair who didn’t know they were descendants at all.
The family tree was lost in the mists of time.
Until one day, a behavioural neurologist at Medellin’s University of Antioquia called Dr Francisco Lopera spotted some unusual statistics for the area. Unusual, and harrowing.
He met a man of 47 who had early onset Alzheimer’s Disease. And he learned, through speaking with the man and his family, that the man’s father had suffered exactly the same condition.
Not only that, but his grandfather and several brothers also suffered Alzheimer’s during their forties.
And Doctor Lopera began to ask around.
In an area notorious for drug trafficking, crawling with lawless rebels from the rebels of the Revolutionary Armed Forces of Colombia, they began to comb villages, tracing those who were related to the family Dr Lopera had encountered.
For a decade, his team tracked birth records, church documents and every other available source to trace this extraordinary family. By the end of 1980’s he had a family tree big enough to cover the wall of an auditorium.
This extended family numbered roughly 5,000 people. The work of the team uncovered the source of the early onset Alzheimer’s: one gene which triggers it. It has been called the paisa gene. Any parent has a 50% chance of passing the condition on to their child.
This painstaking detective work has been spotted by someone who claims to be in a position to find a means of halting the condition in its tracks.
At the forefront of research in this area is the Banner Institute in Phoenix, Arizona.
Dr Adam Fleisher, a geriatric neurologist at the Institute, wants to use the Medellin extended family to run trials of a new drug which might make a difference. Sufferers seem to have a sort of ‘plaque’ which covers the brain. But no-one knows for certain if it is the cause of the Alzheimer’s.
The Family have healthy subjects, and also subjects with Alzheimer’s: one scientist described it as a “natural laboratory”. Now, the five thousand up there in the Andes are set to take part in trials to find out if the drugs will delay – or even halt -the onset of this debilitating condition.
But for this extended family, it takes courage.
One of its members, Patricia, does not know if she carries the gene. Some of her siblings have Alzheimer’s already. And so, in a decision which must have been excruciating to make, she has opted to take part in the trials.
“I have no options,” she tells presenter Bill Law. “I am a little bit worried, but I want to participate: it’s for me, it’s for my family, and it’s for the rest of the world.”
This family may be successful in their grim venture. It may not.
Words fail me here. Those people in the Andes with their agonisingly unenviable choices: they carry the hopes and dreams of millions with them.
I can only wish them godspeed as they journey into the underworld.
Kate Shrewsday 
I heard about this program, but haven’t yet listened.
So interesting, so difficult… and so wonderful – if it defines the cause, leading to some treatments which actually help.
Any disease carried in the genes needs people to step forward and say ‘test me’ – we have two type one diabetics, and have entered as many trials as we have been asked to enter, for this very idea.
I was interested to hear your take on this, Pseu. We know the only way is to go ahead and do the trials, but the people at the centre face the cost: listening to their dilemma is heartbreaking.
Gene research, despite its infancy, is making great strides in some areas of medicine. With so many patients losing their identity and personality to Alzheimer’s . . . let’s keep our fingers crossed for a good outcome to the trials.
A terrific movie on medical testing on human subjects . . . and the value of anecdotal results:
Lorenzo’s Oil, starring Susan Sarandon and Nick Nolte:
http://movies.netflix.com/WiMovie/Lorenzo_s_Oil/60010609?trkid=2361637#height1224
Another related film on the value of anecdotal results is First Do No Harm, starring Meryl Streep:
http://movies.netflix.com/WiMovie/First_Do_No_Harm/60023200?trkid=2361637#height1429
Thanks Nancy….I’ll take a look….
I LOVED Giles (What happened to him?) Every Christmas someone would get another of his books, and I’s snuffle round about Easter to borrow (and like a good girl, return) them. As you remember, the small details were such a wonderful part of it all.
What an interesting trial, and how scary to realise you are under dire threat of that dreaded curse. We all fear being ‘landed’ by our genes with something so scary, yet most of us carry some indicators from our forebearers as to the chances of what will kill us.
Wow, Giles travelled a long way, didn’t he? He died in ipswich in 1995, but he had stopped working for the Express group in 1991. He had been working for them since 1943! Full biography <strong>here
I like the way that you have signposted this post on Alzheimer’s with Giles, Kate. 🙂 a juxtaposition of the humour and sadness of life.
I am reminded of the twin study on Alzheimer’s (http://www.sciencedaily.com/releases/2006/02/060206232300.htm). I don’t think I would want to know if I’m at risk for developing an incurable disease like Alzheimer’s or Huntington’s
i’m w bluebee. juxtaposition – great word to use for this. thx
Thanks Doc 🙂
I feel just the same way, BB. I feel so for the family in the Andes who already know because of their presence in the family. From memory I think Patricia says she should have it by now – her brothers developed Alzheimers at 44 and she’s well past that.
Those Greek masks, comedy and tragedy: the two sides of life are so close. At the saddest times of my life laughter has been my only defence.
most interesting post, Kate…sadly, Alzheimers weighs heavy among my family as I’ve lost a grandparent and at least three great aunts & uncles to the disease..most worrisome ~
It is difficult in these times, because we know so much about how these genes work, and yet we’re only just getting to the point where we can use our knowledge. This morning I was talking to a close relative about another. She used to be a woman apart: she emanated goodness and generosity, and there’s no sentiment about that statement. Now she has Alzheimer’s and she’s calling the cops to sort out the strange man who is in her house. He is her husband of 30 years.
Weighing heavy is right. But it’s possible a solution is close. We can only hang onto that: and as Winston Churchill put it so succinctly, “Keep buggering on”, or perhaps Dory’s “Just keep swimming” is just as appropriate.
You will find threadbare copies of Giles books in most rental holiday homes in South Africa, they are much loved and sought after.
Fascinating about the Alzheimers, I wish them godspeed too.
Gracious, never thought Giles would get that far! The site I referred is a treat, but the dog-eared book is the only way to get the Giles experience properly 🙂
Really interesting post and I very much liked the way you introduced such a serious subject with humour and worked through the extended family. Very deft.
Cheers, Earlybird:-)
I’ve always been a great Giles fan. For many years I could rely on having the compilation for the year among my Christmas gifts.
Scary the thought of how we are pre-programmed to contract certain ailments, isn’t it?
All the more scary now we know about it,Col….but we live in momentous times don’t we? To be so near the possibility of s solution….
Wow. That’s amazing. I have always been glad my Dad died at 64 of lung cancer, because I’m certain he was in the early stages of Alzheimer’s. A terrible disease.
It has suddenly occurred to me that if I’m right, there’s a possibility I could get it too! Can you believe I never thought of that in ten years??
Thanks for the Giles link. I loved him when I was growing up.
My next task is to get some of the old books. Wonder if they have done reprints?
As for genetics, they’re so close, Tilly. With any luck it won’t be long before the condition is controllable.
I went to an interesting talk by George Ebers, a neurologist geneticist a few months ago, and he is very enthused about some of these apparently genetically influenced diseases (eg MS and diabetes) that can be influenced by where one lives in the world: the important factor being how much vitamin D the person gets, via the sun. His talk explained that the influence of low vit D can go back to the maternal g’mother and he wants everyone to have vit D supplementation if they live in low light levels of the world.
it’s the intelligent teasing apart of findings that makes the difference. If the Alzheimer’s research shows who is at risk, there may be a way of identifying a way to reduce that risk. A ‘switching off’ of a gene, or some such.
Alzheimer’s is a hateful disease: I see the effect of it so frequently in my daily work.
Do you know, that was what impressed me most about Dr Lopez: to spend ten years isolating this family, and painstakingly unravelling history. And those with genetic experience have been doindgthe same to isolate a gene they can study. Excellent point, Pseu, thank you.
One more then I’ll stop –
Thanks Pseu: food for thought here…
We’ll all go with something- it’s hard to know if I’d want to know what’ll kill me. My mum has a rare neurological condition and there’s so little known about it, it’s hard to diagnose, never mind do genetic testing. I think I might rather not know in advance and just get on with living the best life I can, until I have to deal with it.
Hi, Speccy – 🙂 I’m with you all the way, Seize every day. Life’s so short. And it’s often very sweet.
Just starting to catch up, Kate, and appreciated this. 5,000. What a brave contribution to humanity many of them are making. I don’t honestly know what I would if I were asked to participate. I hope that I would say yes (and I would hope that insurance would cover me, but, that’s an American story for another day). This reminds me of the retired Catholic nuns who are donated their bodies, their brains, to science to study after they die in the study of Alzheimers. So many unsung heros, aren’t there?
There are, Penny. Makes one humble. Nice to have you around again 🙂