Coffee, Crafting and Cake

 In a quiet backstreet in the heart of Lostwithiel there is a little cafe called 2 Quay Street. Shall we go inside? The windows are quite steamed up...........


Ooooooh, it's lovely and warm in here! 


 The cafe is run by two friends, Amanda and Jane. They both share a love of vintage haberdashery and handmade crafts, so as well as delicious homemade cakes there are plenty of other tempting goodies on offer too!




Cosy and inviting, with comfy chairs and lit lamps, and so much to look at everywhere.....


Shelves full of fabrics and wool,

 baskets overflowing with vintage knitting patterns,

and more wool....


embroidery cottons and sewing accoutrements; bowls of buttons....

reels of ribbon and ric-rac....


and one-off handmade items for sale......

Let us take a break from all this looking and enjoy something to eat and drink,

 but which one to go for????

Last time I had the orange and almond palenta cake......

(Someone has knitted this gorgeous tea cosy of the cafe with Amanda and Janes' names above the door!)

this time I went for Jane's homemade Bakewell tart and a mug of hot choc with cream, mmmmmmm.....

On Wednesday mornings an informal get-together of knitters occurs at 2 Quay Street, which is why Angelica and I met up there today, but I confess not much knitting was achieved in between the lively chat and the consuming of cake and the distractions of vintage loveliness everywhere!

My chief distraction was this set of drawers filled with vintage plastic buttons, each drawer colour-coded.


Spotted on top of a shelf - hee-hee!


Well, I could quite happily have vegetated in a corner observing the comings and goings at No. 2 Quay Street for the rest of the day, but alas, things to do, people to see......there will always be next time! 
2 Quay Street, Lostwithiel, Cornwall
01208 872962

Unsuspected death rates and miners' canaries

One of the major problems with health-risk prediction, from genetic or even other evidence, is that risks are estimated from past data but predictions are of course only for the future.  This is not a minor point!  Predictions are predicated on the assumption that what we've seen in the past will persist.  To a somewhat lesser extent, predictions based on measured risk factors are also based on the further assumption that variables used to estimate risk are causative and not just correlated with the outcome.

An inconvenient truth is that the two, retrospective and prospective analysis, are not the same and their connection hinges on these assumptions but the assumptions are by no means obviously true. We have written about this basic set of problems many times here.

Now a new study, which we saw first as reported here in the NY Times, is that while overall death rates generally have been dropping in the US, the authors note "the declining health and fortunes of poorly educated American whites.  In middle age, they are dying at such a high rate that they are increasing the death rate for the entire group of middle-aged white Americas, [authors] Dr. Deaton and Dr. Case found.....The mortality rate for whites 45-54 years old with no more than a high school education increased by 135 deaths per 100,000 people from 1999 to 2014."

This is very different from other developed countries, for this particular age group, a shown by this figure from the authors' PNAS paper, and deviates from the generally improving age-specific mortality rates in these countries.


From Deaton and Case, PNAS Nov 2015

There are lots of putative reasons for this observation. The main causes of death were suicides, drugs, and alcohol related diseases, as shown below by the second figure from their paper.  There were mental illnesses associated with financial stress, opiate misuse and so on.


From Deaton and Case, PNAS Nov 2015

There are sociological explanations for these results, results that other demographic investigators had apparently not noticed.  They do not seem to be mysterious, nor is there any suggestion of scientific errors involved.  Our point is a different one, based on these results being entirely true, as the seem to be.

When the future is unpredictable, to an unpredictable or unknowable extent
Why were these findings a surprise? First, perhaps, because nobody bothered to look carefully at this segment of our society or at these particular subsets of the data.  To this extent, predictions of disease based on GWAS and other association studies of risk will have used past exposure-outcome associations to predict today's disease occurrences.  But they'd have been notably inaccurate, because the factors Deaton and Case considered either were not considered and/or because behavioral patterns changed in ways that couldn't have been taken into account in past studies.  There may of course be other causes that these authors didn't observe or consider that account for some of the pattern they found, and there may be other subsets of populations that have lower or higher risks than expected, if investigators but happened to look for them.  There is, of course, no way to know what data, causes, or subsets one may have not known about, not been measured, or just not considered.

That is a profound problem with risk projections based on past observations.  The risk-factor assessments of the past were adjusted for various covariates in the usual way, but one can't know all of what one should include.  There is just no way to know that and, more profoundly, as a result no way to know how inaccurate one's risk projections are.  But that is not even the most serious issue.

Much deeper is the problem that even if all exposures and behaviors of study subjects from whom risk estimates were made by correlation studies, these have unknown and unknowable relevance to future risks.   The reason is that the exposures of people in the future to these same risk factors will change, even if their genomes don't (and, of course, no two current people have the same genome, nor the same as anyone's in studies on which risks were estimated).  Even if the per-dose effects were perfectly measured (no errors of any kind), the mixture of exposures to these factors will not be the same and hence the achieved risk will differ.   There is no way to know what that mix will be.

Worse, perhaps by far, is that future risk exposures are unknowable in principle.  If a new drug for treating people under financial stress, or a new recreational drug, or a new type of cell phone or video screen, or a new diet or behavioral fad comes along, it may substantially affect risk.  It will modify the mix of existing exposures, but its quantitative effect on risk simply cannot be factored into the predicted risks because we can't consider what we have no way to know about.

In conclusion
The current study is a miners' canary in regard to predictions of health risks, whether from genetic or environmental perspectives.  This particular study is retrospective, and just shows the impact of failure to consider variables, relative to what had been concluded (in this case, that there has been a general improvement of mortality rates).  The risk factors and mortality causes reported are within the general set of things we know about and the study in this case merely shows that mistakes in using the data and so on--not any form of cheating, bad measurement, etc.--is responsible for the surprise discovery.  These things can be easily corrected.

But the warning is that there are likely many factors related to health experience that are still not measured, but should be, and that there are also an unknown number that have not been measured, for the simple reason that they do not yet exist.  The warning canaries have been cheeping as loudly as they can for quite a while, both in regard to environmental and genomic epidemiology.  The fault lies not in canaries, but in miners' leaders, the scientific establishment, who don't care to hear their calls.

SEN...



En güzel hediyem
 Gözlerimin ışığı
 Kalbimin tek aşığı...


Ruhumdaki ince sızı
Alnımdaki en güzel yazı
Gecelerimin ayazı
Gündüzlerimin telaşı...


Yollarımın tozu
 Aşk'ın bana oynadığı son kozu...













October Update


Just a little update of how the shop's looking at the moment....
Knitted scarves by Alison Dupernex,


 linen toiletry bags with original screen printed designs by Helen Round,

little driftwood boats with vintage fabric sails made by Ruth Browning,





Ruth also makes these delightful driftwood gulls....(so cute)

Wendy's handmade baby shoes...

 and her gorgeous bonnets, all lined with Liberty cotton. Patsy's little notebooks have Liberty covers too...

New into the shop today are these Dorset Posy Brooches by Lizzie Moore, which I have mounted onto  images of a 1950's Vogue coat pattern...

Some of my cards sit alongside a collection of original dress patterns by Simplicity, Butterick and Maudela amongst others (such stylish illustrations!), and below them Patsy's fun bunting all  made from original fashion magazines and patterns from the 50's...

 Dare I say it but a few Christmas things have found their way into the shop this week, as it's half-term and a lot of visitors down here at the moment will not visit again before the big day.



Ooohh I love old baby shoes!

Hope you've enjoyed the little tour 
xxx

HİÇBİR YER

Hülya Koçyiğit’in bir filmi vardır adı ‘’Almanya acı vatan’’
Bilmem izlediniz mi hiç ?
Filmde Hülya Koçyiğit Almanya’ya çalışmaya gelmiş genç bir kadındır. Almanya’da onlarca kadınla aynı dairede yıkık dökük bir bir apartmanda yaşamaktadır. Tatillerde memleketine gönüp Alaman’dan aldıklarını köydekilere satar. E tabi biraz farkla. Tek motivasyonu para kazanmak olmuştur. Maksatı memlekette bir kaç kat alıp belki de bir dükkan açıp rahat etmektir. Ama köyünden birinin Alaman’a işçi gidebilmek için ona formalite eviliik teklif etmesiyle düzeni bozulmaya başlar. Film içinde Hülya Koçyiğit’in bu robotlaşmayı, hipnotize edilmişcesine yaşadığı tutsaklığı sorgulamasını görürüz.


  ****
Yola çıkarken niyetim hikayeyeydi. Hep söyledim, hissettim. Yok ben yapamayacağım deyip içimi ateşe verdiğim anda da telefonun karşısındaki en şahanelerim bana aynı şeyi hatırlattı. Hikayeyi…
Ama aklımın ucundan bile geçmeyen, yıllar öncesinde yazılmaya başlanmış, belki çoktan alışılmış bu gurbet hikayesinin içinde buldum kendimi.
 Alaman’da çalışmak, orada çok sıkıntı çekip sonra ülkeye döndüğünde bir ev bir arsa almak durumu aslında çok sık karşılaştığım bir şeydi. Anneannemin ev sahibi karı koca Alaman’da çalışıp yapmışlardı o apartmanı mesela. Ben bunu neredeyse yedi yaşımdan beri biliyordum. Ama hiç fark etmemiştim yanımdan geçip giden hikayeleri.
 Almanya’da  23 yaşımın son yarısını tamamladığım bu aylarda fark edebildim.
 Burada Almanya’nın hemen hemen her şehrinde ülkesiz köksüz kalmış Türkiyeliler.
 Ne Türkiye’ye ait  kalabilmiş ne Almanyalılaşabilmiş.
 Her daim öteki olmuş. Üstelik her iki toprakta da.
 Ağızlarda bir adapte olamadılar lafı almış yürümüş. Daha ucuz ve sağlıklı iş gücü olarak kabul edilmiş trenler dolusu insanın sadece çalışmasını isteyip hiç hissetmesin, düşünmesin beklemişler sanırım. Gelen işçiler Alman olmak için değil para kazanmak için gelmişken, birden bire kendilerini sapsarı bir Alman kültürü içine atmalarını beklemek çok insafsızca değil mi?  Kendi gelişlerinin ardından ailelerini de buraya aldıran Türkiyiyeliler yavaş yavaş kendi yaşam gettolarını oluşturmuşlar. Bence bir çoğu yeterince para kazanıp dönmeyi düşünmüştü. Ama işler öyle olmadı hayat devam etti çocuklar doğdu. Doğan çocuklar büyüdü okullu oldu. Bir taraftan Alman gavurdu. Adetleri farklıydı asla onlar gibi olunmamalıydı. Çocuklar korunmalıydı. Diğer taraftan hayat her zaman olduğu gibi ileriye aktı. Her şey değişti. Tek kelime Almanca öğrenmeden Türkiye'ye dönme ümidi ile yaşayıp gidenlerin çocukları aslında bilmedikleri, sadece yıllık izinlerde gördükleri bir yere ait olarak Almanya’da büyüyordu. Almancasının arasına sıkıştırdığı Türkçe sözcüklerle Türk, Türkçe konuşurken araya sıkıştırdığı almanca kelimeler yüzündense hep Almancıydı.
  Almanyalılar ötekileştirdikçe daha çok Türklüğe sığınan Türkiyeliler, kültürlerini siyasi bir tavır alarak haddinden fazla sahiplenmiş durumdalar şimdi burada.

 
Hamburg’ta bir işim vardı ve tren garından inince şöyle bir etrafa bakayım dedim. Hiç fark etmeden o sokak mı bu sokak mı derken bir Türk mahallesine düştü yolum. Rengiyle, kokusuyla, insanlarıyla şehrin tükürdüğü o sokak hiçbir yerin resmi gibiydi. İçimin sıkıldığını hissedip, hızlı adımlarla gara döndüm. Sonra birden tepeden bu tren raylarını görünce aklımdan bunlar geçti. Film, o güne kadar konuştuğum tüm Almanyalılar, Türkiyeliler, işçiler, hepsi .... Tam bu fotoğrafı çektiğin o anda, trenlerin içine insanların ruhlarını doldurup gerçekten var olmak isteyecekleri bunu hissedecekleri yerlere dağıtmak istedim.

   Bunlar aklımdan geçerken koca puntolarla yazılmış bir sorum var içimde kendi köklerime dair ‘’Onlar sürüldükleri topraklardan geride binlerce ölü bırakmışken, işte sizin yeni hayatınız burası denildiğinde neler yaşamışlardı?’’  




Koşulsuz Ebeveynlik - Neden Olmasın?


Bir kitap okudum hayatım değişti derler ya, bir kitap okudum ve hayata bakış açım değişi diyebilirim ben bu durumda. "Koşulsuz Ebeveynlik - Ödül ve Cezaları Terk Edip Sevgi ve Akılcılığa Yönelmek" Kitabın ismini okuduğunuzda, "ah evet ben zaten çocuğuma ceza vermem ki" diye düşünüyorsunuz ya da " yemeğini yediği için ona sticker falan da yapıştırmam" ve tabii ki "ben çocuğumu zaten seviyorum." ama yanılmışım...
Aslında kitabın bana geliş hikayesinden kısaca bahsetmeliyim (evet geliş çünkü kitap bana gel-di, beni oku dedi) Yaklaşık bir ay önceydi, arkadaşım Yeliz Günün Çorbası, isimli blogunda ya da instagram hesabında ve tabi kitap kulübümüzde  bu kitaptan bahsetmişti. Benim de ilgimi çekti, ancak internetten sipariş verirken tükenmiş olduğunu gördüm ben de onun hesaplarından birinde tükenmiş alamadım gibisinden bir yorum yazdım. İşte bu olaydan bir ay bu yazıdan da bir hafta önce kitabın çevirmeni ve Görünmez Adam Yayıncılığın sahibi Yiğit Ataman bana mail atmış, kitabı bana ulaştırabileceğini, internet kitapçılarıyla ilgili bir sorun olduğunu yazmış. Sonuçta adresimi verdim ve kitap bana geldi. (Buradan da teşekkür etmek isterim)
Önce Asya ve benim ilişkime dair bir şey okuyacağım, diğer ebeveynlik kitaplarındaki gibi yöntemlerle karşılaşacağımı düşündüm. Ancak kitabı okumaya başladığımda artık ben çocuktum, kitabı kendi çocukluğumun gözünden okudum ve çok etkilendim.
"O halde şunu söyleyebiliriz ki, koşullu veya koşulsuz ebeveynlik arasında seçim yapmak, aslında insan doğasına yönelik iki farklı bakış açısı arasında seçim yapmaktır."
Sorgulamaya başladım "sevgi neydi" sevgi emek miydi gerçekten? çocuğumuzu neden seviyorduk ki ya da herhangi bir insanı neden? sevginin nedeni olur muydu? kalpten gelmez miydi sevgi? Sevgi bize ait bir şey miydi? peki bir çocuk hiç bir nedeni olmadan sevilemez miydi? Biz de sevgiyle yaratılmamış mıydık? Her şeyi iyileştirecek olan şey sevgi değil de neydi?
Bir çocuğu terbiye etmeye çalışmanın ne kadar da insafsızca ve sevgisizce olduğunu farkettim ve bunca zamandır beni eğitmeye çalışan insanları düşündüm. Neden ben, onların olmamı istedikleri kişi olayım diye çabalıyordum ve neden ben her kendim oluşumda beni sevmiyorlardı?
Ben ailesi tarafından cezalandırılan bir çocuk olmadım, çok sert kurallarımız yoktu ama sevginin geri çekilmesinin ne demek olduğunu çok iyi biliyorum. Sırf birilerinin (annem, babam, eşim, öğretmenim,patronum) bana olan sevgisi azalmasın diye kuzu kuzu onların istediklerini yapmanın ve "uslu kız" olmanın ne demek olduğunu da biliyorum. Bu bir toplum meselesi bence ve neden böyle yönetildiğimizin de kanıtı. Otoriteye sorgusuz sualsiz bağlılık, ailemizin bizi yetiştiriş tarzından geliyor.
Koşulsuz Ebeyenlik kitabı, bize bir hayat dersi veriyor. Öz saygımızı kazanmamız, başkalarına karşı saygılı olmamız , empati yeteneğimizi geliştirmemiz ve koşulsuz olarak sevmemiz. Biz ne zamandan beri çocukları küçük ve aptal insanlar olarak tanımlamaya başladık acaba? o yüzden mi çocuklarımız küçücük bir şey yaptıklarında onları alkışa boğuyor ve ne kadar zeki olduklarına şaşıyoruz? Çocuklarımıza iyi ana babalar olmamız için kendi çocukluğumuzu iyileştirmemiz ve kendi çocuk halimizi kabul etmemiz gerekiyor. Bu güzel kitabı anlatmayı, kitaptan bir cümle ile bitirmek istiyorum.
"Bir zamanlar bize neler yapıldığını farketmek canımızı çok yakar."

YOLU TUT



Tut yolu, bırakma... 
Ağaçları ve gökyüzünü ekle hikayene 
Yol yorgunluğunu teğelle özlemine 
Kavuşmayı dile
Dönmeye niyet et 
Sonra yeniden yola çık
Tut yolu bırakma
Özle ama nasıl bir özlemek 
Gökyüzü kadar, ağaç kadar, orman ve yıldız kadar 
Özle ama yolu tut 
Bırakma



Hisset...




Ruhum sana  sağanak yağıyor... 
her yer buram buram toprak kokusu...
 hissediyor musun?


Why is the human vagina so big?

We are obsessed with penis and testicle size. Yet, we can barely say "vagina" and when we do we're usually talking about the vulva.

Everyone's come across some article somewhere on-line that is thrilled to share how big human penises really are, for primates, and to explain why they evolved to be so big. It's not really the length, but the girth. Alan Dixson is your go-to on this. He's conservative in his assessment of the literature on penis size and even he concedes that human penis "circumference is unusual when compared to the penes of other hominoids (apes)" (p. 65 in Sexual Selection and the Origins of Human Mating Systems).

A favorite explanation for the big phallus is female mate choice, that females selectively make babies with males who have larger and, presumably, more pleasurable semen delivery devices. This is backed up by studies. When life size projections of naked men are shown to female subjects, they say they find the ones with bigger ones to be more attractive. [This is exactly how mate choice works where I live, how about you?]

Other explanations include male competition. If you can deliver your package to the front yard but the other guy can deliver to the front door, his is more likely to be carried inside the house first. Or, if he can steal away what you just delivered, then, again, his package has yours beat. Thanks to his big penis he's more likely to pass on his winning penis genes than you are to pass on your loser penis genes. Loser.

All this is just terribly fun to write about and I'm not even going nuts (gah) like they do. And they do. They really do. And all over the Internet they do: "Evolution of human penis" gets 53,000 hits just on scholar.google alone, and about 832,000 on Google.

But doesn't it make sense that for a penis to be somewhat useful it has to be somewhat correlated to vagina size?

I'm talking about all penises in the universe and all vaginas too. Sure there's variation, but a penis can't be too wide. It helps to be long, probably, but it can't be too long.

So neither pleasure nor psychology need matter at all, just function associated with some sort of fit. Pleasure and psychology are never invoked to explain penis morphology in other animals. If anything, it's the cornucopia of horrifying, not pleasing, animal penises that begs for evolutionary explanations.

Wouldn't you explain the size and shape of the key by the size and shape of the lock? So wouldn't it be a little more scientifically sound to hypothesize that the human penis is sized and shaped like that because it fits well into the human vagina?

Sure, it gets chicken-and-eggy or turtles-all-the-way-downy, but c'mon. Isn't it a bit obvious that the privates that fit inside the other privates are probably correlated? You'd think that even the people who have never had intercourse would default to this explanation for the evolution of the human penis.

Figure 2.  Examples of genital covariation in waterfowl.
Figure 2. Examples of genital covariation in waterfowl.
(A) Harlequin duck (Histrionicus histrionicus) and (B) African goose (Anser cygnoides), two species with a short phallus and no forced copulations, in which females have simple vaginas as in Fig 1a. (C) Long-tailed duck (Clangula hyemalis), and (D) MallardAnas platyrhynchos two species with a long phallus and high levels of forced copulations, in which females have very elaborate vaginas (size bars = 2 cm). ] = Phallus, * = Testis, ★ = Muscular base of the male phallus, ▹ = upper and lower limits of the vagina.
doi:10.1371/journal.pone.0000418.g002

But we're rarely, if ever, told that human penises are relatively girthy because human vaginas are. It's always about male competition or female preference.

Sure, we may be a little weird compared to our close relatives for not having a baculum (penis bone), and maybe that's the sort of thing you want to explain for whatever reason, but does human penis size and shape need a uniquely human story?

Assuming it's correlated to the vagina like it probably is in many other species,* then no it doesn't... unless the size and shape of the human vagina has an exceptional story.

Does it? We wouldn't know. There are zero (look!) articles titled "Why is the human vagina so big?"

Until right now.

Here we go. If we were going to answer it the same way we've long explained the human penis, and other animal penis shapes, then we've got a few ideas...

Because walking upright made the vagina conspicuous and males thought a bigger vagina was better. Because big vaginas outcompete small ones at catching sperm. Because of male pleasure from coitus with a big vagina. Because of heat dissipation or thermoregulation. Because of a tradeoff with brain size.

And of course, we'd need to demonstrate that the human vagina is in fact larger, relative to body size, than the vaginas of other primates. Regardless, a sound answer to the question of vagina size and shape focuses on childbirth, wouldn't you say? She's got to be big enough to push out a baby and, for humans, it's a great big baby. 



So if there's an exceptionally human story for the great big human penis, that exceptional story originates not in a woman's orgasms, not in her pornographic thoughts or her lustful eyes, but in her decidedly unsexy "birth canal."

And I dug up a nice little note to explain this to us all written by Dr. Bowman, a gynecologist, back in 2008 for the Archives of Sexual Behavior


That note is magnificent. It starts out giving the only vagina-size-based, not to mention childbirth-based, explanation for human penises that I can find in the literature (which is thankfully cited by Dixson in his book mentioned above). But it still manages to bring the explanation beyond the vagina and onto another proud triumph: "In sum, man’s larger penis is a consequence of his larger brain."

After you clean up the coffee you just spat onto your computer screen, you can read it all for yourself up there in the figure.

Guess who didn't read it? That study in PNAS, mentioned above, that showed women naked penises, got a high attractive score for the big ones, and thinks that's evidence for mate choice now, today, let alone back when (I'm going to speculate that) women had a tiny bit less of it.

Point is, the literature rages on with the special explanations for the big penis with nary a big vagina in sight.

But you heard it here, at least.

Childbirth is why the human vagina is so big and, consequently, why the male penis is so big. It's pretty straightforward. Yet we're still left scratching our heads as to why the penis question endures.

Is evolutionary science averse to big vaginas?

Does nobody love a big vagina?

Because that's just ridiculous. Everybody came from one.



*Unfortunately a few scholar.google searches led me to find no cross-species comparisons of mammalian vagina lengths or any vaginal measures. It may be out there, but I haven' t found it. I found some measures for bitches... DOGS! And some heifers... COWS! So I've got to compile some data if I'm to do this properly. Baby size might be a way to do this.

**UPDATE. p. 73 in Dixson has Figure 4.3 with nine primate species' penile and vaginal lengths plotted. Thanks Patrick C for reminding me where I'd seen something like this and where to point readers!

My grandmother's dementia and me

My father's mother had Alzheimer's disease, or dementia of some sort, as did her sister.  Both lived with us at different times when I was a child, my great-aunt until she died in the bedroom upstairs, and my grandmother until she was impossible for my parents to care for, at which time they found a very kind, very patient woman with a big house in the country, and she went to live there.

These two sisters, the only children in their family, were always close.  They both worked all their lives, and were extremely competent and very kind.  My great-aunt never married; her fiancé had gone off to fight in the Spanish-American war, but died during an outbreak of yellow fever in Florida before he ever got to Cuba.  But, she lived with a cousin for many years.  When my parents finally cleaned out the apartment after my great aunt died, one of the things they found in the attic was a skull that must have once been used for teaching anatomy.  No one had any clue how it ended up in that attic.  My parents have displayed in their living room for most of my life.  My mother's theory, after years of living with it, is that this is the skull of a poor man who was suffering from an abscessed tooth, and he shot himself in the head because he couldn't stand the pain.  Here's a sketch.

Sketch by A Buchanan


My grandmother married and had one child, my father.  My grandparents, my great-aunt and her cousin all lived perhaps half an hour from us, in the town where my father had grown up, and my grandfather drove them all to visit us on Sunday afternoons.  He loved driving -- he enjoyed taking my sisters and me for drives in the country. What I remember most about these drives was the overwhelming odor of his strong cigars.  (He used to enjoy shooting woodchucks, too, happy to be doing farmers such a favor.  I remember going with him and my grandmother once on such an outing, but I refused to take a shot, which disappointed him.  He would steady his gun on the roof of the car, aim and shoot.  He draped the one woodchuck he killed the day I was with him over the gate into the field he'd shot it in, so that the farmer would take note.  One Sunday when they came to visit, there was a bullet hole in the roof of the car, over the passenger side -- I don't remember that that was ever explained.)

Dementia does unpredictable things to people.  My great-aunt -- Aunt, we called her, as my father had -- was always cheerful and sweet, if a bit confused.  Every morning she would ask where she was, but she was still able to play cribbage with us, she loved having us comb her long thin hair, past grey, now yellowed, and pin it into a bun.  I don't remember that she ever fussed about anything.

My grandmother, on the other hand, was distraught with worry from the moment she woke, to the moment she went to bed, and probably long after that.  She would sit at the kitchen table all day every day, every few minutes asking the same worried questions in the same frantic way.  She was miserable.  Occasionally she was able to access a part of her brain that reminded her that she was confused, and that made things even worse.

Apart from being two different versions of the same heart wrenching story that could be told by so many people, this raises several questions.  Was this two sisters with very different forms of the same disease?  Or, did they have two different diseases?

And, did the fact that both his mother and his aunt had dementia mean that my father was at higher risk of dementia himself?  Apparently not, as he is now in his late 80's, still very active, very engaged, mentally and even physically.  In turn, does this mean that my sisters and I don't have to worry about dementia ourselves?

Or is it secular trends in Alzheimer's disease that we should pay attention to?
One measure of a condition's impact is its prevalence.  That is the fraction of the population at a given point in time that is affected.  A recent BBC Radio 4 program, More or Less, discussed changes in Alzheimer's prevalence over time, after a paper reporting (among many other things) decreased prevalence of dementia in the UK was published in The Lancet ("Global, regional, and national disability-adjusted life years (DALYs) for 306 diseases and injuries and healthy life expectancy (HALE) for 188 countries, 1990–2013: quantifying the epidemiological transition," Murray et al.). According to the study, prevalence of dementia in British people over age 65 has declined by more than 20% in the last 20 years; it's currently about 7 percent of that segment of the population.

This is in striking contrast to a recent report in the UK that estimates that 1/3 -- 33%!-- of the British children born in 2015 will have dementia in later life.  Tim Harford, presenter of More or Less, pointed out, though, that it's odd that this number was taken seriously by anyone, given that it is equivalent to thinking that predictions made 100 years ago, when AIDS wasn't known, antibiotics not yet discovered, and so on, would have any credibility. And, the 1/3 estimate was based on 20 year old data.  (A quick check of prevalence of dementia in the UK is a bit confusing -- many sites caution that the number of people with Alzheimer's disease is rising rapidly.  It's an Alzheimer's time bomb, they warn.  But, given that the population is both aging and increasing, this isn't, in itself, a surprise, or very meaningful in relation to individual biological risk because, again, it's the fraction of the population that is affected that is the significant statistic.  To be clearer, if more people live longer, even the same age-specific risk of getting a disease will lead to more people with the disease, that is, higher prevalence in the population.  Of course, the number of affected individuals is relevant to the health care burden.)

How predictable is dementia?
Carol Brayne, one of hundreds of authors on the Lancet report and interviewed for More or Less, speculates that the reported fall in prevalence has to do with changes in 'vascular health', as incidence of heart attacks and stroke have fallen as well.  She suggests that it seems as though the things we have been doing in western countries to prevent cardiovascular disease have been working.

But of course this assumes we know the cause of dementia, and that it's in some sense a cardiovascular disease.  But, we don't understand the cause nearly well enough to say this, and in fact, like most chronic diseases, dementia is many different conditions, with many different causes.

The genetic causal factors related to Alzheimer's disease include mutations in a few genes, but these account for only a fraction of cases.  Mutations in the two presenillin genes can lead to early onset Alzheimer's. The most commonly discussed genetic risk factor has to do with the E4 allele in the ApoE gene, whose physiology is related to fat transport in the blood.  It seems to be associated with the development of plaque in brains of people with late onset (60s and over) Alzheimer's, but the association is complex, people without the E4 allele also develop plaque, and people with plaque may not have dementia, and the causal mechanisms are unclear.  Risk seems to depend on whether one carries one or two copies of the E4 allele, and seems to be higher for women than for men, and is apparently affected by environmental factors, but it does seem to raise risk from something like 10-15% in people over 80 to 30-50%.

What this means, even if the statistics were reliable, the risk estimates stable, and environmental contributions minimal, is that it is obvious that even having two copies of the risk allele is not a guarantee of Alzheimer's disease. And, in some populations having two copies isn't associated with Alzheimer's at all (Nigeria, e.g.).  In addition, while the association with increased risk has long been described, the physiology is still not understood. GWAS have reported other genetic risk factors, but not nearly as consistently as ApoE4, nor as strong.

The reported decline in dementia prevalence is not new; we blogged in 2013 about dramatically decreasing rates in the UK, as well as in Denmark, as reported by Gina Kolata then.  So, how can it be declining rapidly, but the strongest risk factor we know of is genetic -- and the frequency of this variant is not changing enough to even begin to account for the data?  Or, is Carol Brayne right that dementia is a vascular disease, and vascular diseases are on the decline, so Alzheimer's is, too?

Indeed, even the definition of whether you 'have' Alzheimer's or not is changeable and not precise, and researchers don't even agree on what an Alzheimer's brain looks like.  A good discussion of these various factors, including social and economic aspects and the history of studies of Alzheimer's, is a book The Alzheimer Conundrum, by Margaret Lock, a fine medical anthropologist at McGill in Canada (and friend of ours).  

Can Alzheimer's be prevented?
The causes of Alzheimer's disease are so poorly understood that it's said that the best prevention is to exercise, quit smoking and maintain a social life.  Very generic advice that could apply to a lot of things!  If we don't know what causes it, and there are probably environmental risk factors, which we don't really understand, relevant past environmental agents are unknown, future environments impossible to predict, and genetic risk factors not good predictors, then we certainly don't know how to predict population prevalence rates, not to mention who is most likely to develop the disease.  (NB: this is pertinent to late-onset dementia; early-onset is more likely to have a genetic cause, and is thus more likely to be predictable.)

Given the experience of two generations in my family, should I or shouldn't I worry about developing dementia?  If my grandmother and great-aunt had the ApoE4 risk allele, my father may or may not, and my sisters and I may or may not.  If they did and my father does, it's a good example of an allele with "incomplete penetrance," for which either genetic background or environmental risk factors or both are also necessary.  Which makes predicting dementia difficult, whether or not we were to have the risk allele. If they didn't have it, something else caused their dementia, and we have no idea what that was.  Indeed, they were both social, never smoked, and walked to work for decades.

To me, as to most people, dementia is frightening.  But, obviously, my family history is useless in terms of determining my risk -- my grandmother had it, my father doesn't.

Still, every time I forget someone's name, I think of my grandmother.

İç Ses - 19

Özlemek ..
Herkes yani özleyen kişi dışındaki herkes özlemenin alışmakla, bir düzen kurmakla ilişkisi olduğunu söylüyor. En azından benimkiler öyle söylüyor.
Oysa özlemek alışmanın dışında bir durum . Ben de bilmiyor muşum aslında. Özlemeyi nedense güçle, güçlü olmakla ilişkilendirmişim. Akıllı ve güçlü çocukların özlememesi , özlemini ifade etmemesi gerektiğini düşünmüşüm. İlk günlerdeki özlemimin içinde - itiraf ediyorum ki - biraz da utanma vardı. Yapmak zorunda olduğum şeyi yapamamışım gibi hissediyordum. Özlememem gerekiyormuş ama ben özleyerek - hem de daha ilk günden başlayarak- anlaşmayı bozmuşum gibi.
 Şimdi durum  biraz değişti. İçimdeki özleme hali diğer bütün duygulardan arındı daha yalın ve daha gerçek bir özlemeye dönüştü. Bu özlem fiziksel olarak yaşayamamak değil, mental olarak kendini kaptıramamak. Kaptırmak zorunda kalmış olsa da bunun asla tam manasıyla gerçekleşemeyeceğini anlamak. ( Burada devreye Almancılar giriyor ki o konuda da söylemek istediklerim var.Bir ara..  )
 Tabi bir de çağımız tepeden tırnağa etiket çağı olduğundan, eğlenceli,  karizmatik duygu ve durumlar dışında kalan şeylere karşı ‘’ Yo yo yo….  Öyle düşünme, ciddiye alma, ya daha gençsin bunlara takılma .. ‘’diyen akıl hocaları da oluyor etrafta. Belki de olumsuz olan her şeyin hızla  yapış yapış bir acıtasyona dönüşmesi bu tavrı destekleyen bir detay. Bilemiyorum. Herkesi bir dakikalık ağlama törenine de davet etmiyorum. Söylemeye çalıştığım şey, başlangıç noktası aynı olan  yolculuklar  hiç bir zaman aynı seyretmiyor. Ben bu değişim sürecinde içimdeki özleyebilme gücüyle tanıştım mesela. ( Belirtmeden edemeyeceğim iyi özleyebiliyormuşum, gayet çokmuş bende :) )
Bazen durup dururken, bir sesle, bir duyguyla ya da bir kokuyla   zihnimde filmlerdeki gibi zamanda geri dönüşler oluyor mesela. O dönüşlerden  birinde yıllar önce okuduğum bir otobiyografi kitabını hatırladım. Yazarı siyasi karmaşa yıllarında Türkiye’den sürülmüş ve soğuk kuzey Avrupa’da yaşamak zorunda kalmış. Okurken zihnimde yalnızca estetik bir kare belirmişti, bir film sahnesi gibi. Kuzeyin karanlık ışıları, puslu karlı kayınlar… Şimdi ise yazarın anlattığı daha sonra da bestesini  yaptığını o duyguya karşı gerçek bir empatiye sahibim. onlarca yazar, onlarca sanatçı, onlarca şair…
 Yolu belki kaderle, belki kederle buraya düşen her Türkiyelinin gözünde o empatiyi görüyorum. Sınırların devlet eliyle yasaklanmamış olması, onların içindeki sürgünlüğü ve özlemi dindirmiyor. Belki farkında değiller ama hepsinin gözünde Nazım’ın anlattığı karlı kayın ormanlarının sisi var. Özlemek deyine şöyle bir iç geçiyorlar…
  Yurdundan  uzak olmak, bir daha büyüdüğü güneşin altında yürüyemeyecek olmak sahiden ölümcül bir duygu. Ve bu duygu da tıpkı aşk gibi birbiriyle hiç alakası olmayan iki insanı aynı noktada buluşturabilir.
  Bir ülkeyi başka bir ülkeye bağlayan etrafı yemyeşil otobanda ilerlerken hiç tahmin etmediğin bir anda , arabadaki  uzun yol cdsinin içinden yayılan Ahmet Kaya’nın sesi değil, işte bu ortak duygudur aslında.

Özlemle ….




Rare Disease Day and the promises of personalized medicine

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