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Genetically programmed to self-destruct   Leave a comment

Volume 358, Special Issue, S20, December 2001

The Lancet

 

Samantha Hillyard was diagnosed with cystic fibrosis on the day of her birth (11/08/73). She is on the executive committee for the International Association of Cystic Fibrosis Adults, and has been European editor of their newsletter for 6 years. She is also a founder member of Friends for Life. Sam lives in the countryside with her partner, Phil, where she breeds chickens and is writing a novel.

While I was growing up with cystic fibrosis I thought of the disease as something that gave me a unique identity different from my peers. I was blissfully ignorant of the pending realities ahead. Up to adolescence I had many operations to remove nasal polyps. My thoracic symptoms were few, thanks to early diagnosis, but I regularly suffered with blockages of the bowel and severe abdominal discomfort. However, I classed these symptoms as normal and as something that I had partial control over, if I ate the right things.

By my teenage years my lungs had become colonised by Pseudomonas aeruginosa, and as a result I coughed aggressively from my teens into my mid-twenties. Even in the days when I didn’t see any immediate effect—ie, sputum—I always did my chest physiotherapy. I believe that my compliance was purely down to an obsessive need for routine.

By the age of 17, I was living on my own, and had a full-time job and an active social life. I was still having daily physiotherapy and taking medication religiously, but now alongside the new, and sometimes excessive, lifestyle I was enjoying (including smoking for a year).

Over the next 5 years the pace of my life gradually slowed down. Although my lung function was still reasonable, I began coughing up blood more and more often. My concern about the frequency of these bleeds grew. Feelings of self-consciousness intensified, since I was now unable to conceal my condition from the outside world, especially at work. As a result, I became stressed, tired, and run-down.

I decided to give up work and live on disability benefits. I did, however, continue to work from home on a voluntary basis, writing articles and eventually editing magazines for people with cystic fibrosis. In the meantime, my bleeding had reached the stage where just bending over could spark off an episode. I was also experiencing strange losses of sensation to parts of my body, accompanied by confusion, visual impairment, and paralysis. Furthermore, my clinic was over an hour away and I never felt I was taken seriously when I reported my problems. Besides, none of the drugs suggested made any difference.

In the summer of 1996, I became depressed. For the first time I was not in control of my body. That autumn I had a huge bleed and, as I fell unconscious (now paralysed and unable to see), I didn’t want to be revived. That was the most frightening experience of my life, and it was also the day that I was crudely stripped of my confidence. After I awoke, I was eventually able to call for help, and was taken to hospital for an emergency blood transfusion. The next day I had a bronchoscopy, then embolisation was done (figure). After this procedure my bleeding fluctuated. I had several large bleeds, but none, thankfully, as big as the previous haemorrhage. Even now, I have traces of blood in my sputum every day.

At about this time seizure-type symptoms started to become more regular, and I had to surrender my driving licence. Eventually, I was referred to a neurologist, who diagnosed herniation of the hind-brain. My seizures were caused by this weakness, brought about by regular coughing throughout my life. Although relieved to have a diagnosis, I felt cheated; the physiotherapy I had been diligently doing to maintain my health had backfired. Yes, as a result of it my life had been extended, but its quality had been greatly reduced.

Since the bleeding that I experience often accompanies seizures, or is positional (ie, when lying down), I now need company 24 hours a day in case of a seizure. Emotionally, I have found this necessity very hard to deal with, and eventually I developed an eating disorder to regain some control over my own body.

I feel that I am learning to cope with my circumstances, with help from my partner, family, and friends. I now attend a different clinic, which is understanding of my needs, and where the staff are helping me to adjust my treatment to suit me. For instance, they are exploring different forms of physiotherapy to minimise the pressure on my herniated brain, and as a result my seizures are becoming less frequent. Being a partner in my own care has helped me to rebuild a little of the confidence I have lost.

I am thankful for medical research, because I am sure that without it I wouldn’t be here. However, as we get older, people with cystic fibrosis are encountering so many more problems, often due to ongoing medical intervention. Just a few examples of these additional difficulties include osteoporosis, diabetes, eczema, stress incontinence, vaginal and oral thrush, loss of bowel reflex, infertility, and severe pain in the lungs, abdomen, and joints.

I am genetically programmed to self-destruct, yet I must try to beat my personal genotype (Delta F508/Delta F508) with the same rebellious determination that I displayed to my parents as a teenager.

Posted Μαρτίου 20, 2016 by msofcrete in Medicine

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Αυτοκτονίες και οικονομική κρίση: Ένα «αντίστροφο στίγμα» γεννιέται;   Leave a comment

Γράφει για το HealthReport.gr ο Κωνσταντίνος Ν Φουντουλάκης, Αναπληρωτής Καθηγητής Ψυχιατρικής ΑΠΘ

Από το 2008 μια παγκόσμια οικονομική κρίση έπληξε τον κόσμο αλλά ιδιαίτερα τηνΕυρώπη και τις ΗΠΑ με σοβαρές συνέπειες στην παροχή υπηρεσιών υγείας και με μεγάλο θύμα την ψυχική υγεία. Οι ψυχικά ασθενείς αποτελούν μια ιδιαίτερα ευάλωτη ομάδα του πληθυσμού και πιθανότατα εκτίθενται σε αυξημένες πιέσεις και κινδύνους κατά τη διάρκεια παρόμοιων κρίσεων.

Είναι ιδιαίτερα σημαντικό να τονιστεί ότι υπάρχει η ευρύτατα διαδεδομένη άποψη ότι οι οικονομικές κρίσεις και η λιτότητα αυξάνουν ειδικά τις αυτοκτονίες.

Στην κλασσική δουλειά του το 1979 ο Brenner προτείνει ότι για κάθε 10% αύξησηστην ανεργία υπάρχει μια αύξηση 1.2% στη συνολική θνησιμότητα και αυτό περιλαμβάνει μια 1.7% αύξηση στην αυτοκτονικότητα. Κατά το παρελθόν οι διάφορες οικονομικές κρίσεις έχουν συνδεθεί με αύξηση της αυτοκτονικότητας, όπως κατά την μεγάλη ύφεση του μεσοπολέμου ή την κρίση στην ανατολική Ευρώπη και την Ασία τη δεκαετία του 90.

figure 1

Επιπλέον υπάρχουν πολλές δημοσιεύσεις που αναφέρουν ένα παρόμοιο φαινόμενο όσον αφορά την παρούσα κρίση τόσο στην Ευρώπη όσο και στις ΗΠΑ.

Από την άλλη μεριά, τα ποσοστά των αυτοκτονιών ποικίλουν εντυπωσιακά από χώρα σε χώρα και από περιοχή σε περιοχή και αυτό συμβαίνει για λόγους που δεν είναι γνωστοί και είναι σε μεγάλο βαθμό ανεξήγητο ιδίως με βάση το γεγονός ότι η γενική ψυχιατρική νοσηρότητα είναι κατά βάση παρόμοια ανεξαρτήτως έθνους φυλής ή κουλτούρας.

Αυτό δε σημαίνει ότι η αυτοκτονία μπορεί να συμβεί σε άτομα που δεν πάσχουν από κάποια ψυχική διαταραχή. Η σχεδόν απόλυτη σχέση αυτοκτονίας και ψυχικής διαταραχής έχει αποδειχθεί από πολλές μελέτες ψυχολογικής αυτοψίας.

figure 2

Οι όποιες εξαιρέσεις δεν είναι παρά αυτό ακριβώς: εξαιρέσεις και δεν επηρεάζουν τα νούμερα. Απόψεις που ακούγονται συχνά ότι απολύτως υγιή άτομα μπορεί να αυτοκτονήσουν σε σημαντικούς αριθμούς (ώστε να μεταβάλλουν τις στατιστικές) σαφώς δε βασίζονται σε δεδομένα και λειτουργούν παραπλανητικά δημιουργώντας ένα «αντίστροφο στίγμα»

Η αιτιοπαθογενετική σχέση μεταξύ ανεργίας και αύξησης της αυτοκτονικότητας δέχθηκε πρόσφατα σφοδρή κριτική καθώς φαίνεται ότι τόσο στην Ευρώπη (συμπεριλαμβανομένης της Ελλάδος) όσο και στις ΗΠΑ οι αυτοκτονίες αυξάνονταιπερίπου ένα έτος πριν αρχίσει να αυξάνεται η ανεργία.

Επίσης, όσον αφορά την Ελλάδα, η λεπτομερής ανάλυση των δεικτών αυτοκτονίαςκατά φύλο και ηλικία δείχνει ότι στους άνδρες η αύξηση είναι εμφανής σε όλες τις ηλικιακές ομάδες εκτός των <14, 25-29, και >80. Στις γυναίκες είναι επίσης παρούσα σε όλες τις ηλικιακές ομάδες εκτός των 40-54 και 65-69.

Όμως, και αυτό είναι το πιο σημαντικό, η μεγαλύτερη αύξηση (σύγκριση πριν και μετά το έτος 2010) παρατηρείται σε γυναίκες ηλικίας 15-19 (149.18%), 20-24 (148.65%), 35-39 (86.24%) and 55-59 (60.74%). Σε σύγκριση η υψηλότερη αύξηση στους άνδρες αφορά την ηλικιακή ομάδα 55-59 (61%).

Τα δεδομένα αυτά δεν συνάδουν με την υποτιθέμενη αλληλεπίδραση ανδρικού φύλου παραγωγικής ηλικίας και ανεργίας. Άλλωστε στην Ελλάδα το υψηλότερο ποσοστόαυτοκτονικότητας παρατηρείται στην Κρήτη που έχει από τα πιο μάλλον χαμηλά σχετικά ποσοστά ανεργίας, ενώ τα Ιόνια νησιά έχουν το ίδιο ποσοστόαυτοκτονικότητας με τη Στερεά Ελλάδα που έχει διπλάσιο ποσοστό ανεργίας.

Είναι ενδιαφέρον ότι πρόσφατα παρατηρήθηκε μια αύξηση των περιπτώσεων αυτοκτονίας που αποδίδονται σε οικονομικά προβλήματα στην Ιταλία. Η Ιταλία είναι ίσως η μόνη χώρα που καταγράφει τον παράγοντα αυτό.

Ωστόσο οι συνολικές αυτοκτονίες στη χώρα παρέμεναν σταθερές και απλά παρατηρήθηκε μεταβολή της απόδοσης της αιτίας από συναισθηματικά σε οικονομικά αίτια, προφανώς ως επίδραση της επικαιρότητας.

Κάποιος θα μπορούσε να υποστηρίξει ότι εκείνοι οι άνθρωποι που πρόκειται να χάσουν τις δουλειές τους στρεσάρονται μήνες πριν αυτό συμβεί. Όμως ο φόβος της ανεργίας είναι διαφορετικός από την ανεργία αυτή καθαυτή.

Μια τέτοια υπόθεση προτείνει ότι αυτοκτονίες εργαζομένων και όχι ανέργωνευθύνονται για την αύξηση των ποσοστών. Το γεγονός ότι υπάρχει μια ασταθής αύξηση της αυτοκτονίκότητας ακόμα και σε ευημερούσες χώρες με χαμηλή ανεργία(πχ Νορβηγία) οδηγεί στο συμπέρασμα ότι κάποιες άλλες μεταβολές στο κοινωνικοοικονομικό περιβάλλον θα πρέπει να ενοχοποιηθούν.

Πιθανότατα τέτοιο παράγοντες να είναι η εφαρμογή ευέλικτών μορφών εργασίαςαλλά κυρίως η ανάπτυξη ενός αυστηρού εργασιακού περιβάλλοντος μέσα στο οποίο η ευάλωτη ομάδα των ατόμων με ψυχική νόσο δε μπορεί να προσαρμοστεί και να λειτουργήσει.

Αν αυτή η υπόθεση αποδειχθεί σωστή, τότε η ευημερία ως γενική κατάσταση και η μείωση της γενικής ανεργίας πιθανότητα δε θα συνοδευτούν και με μείωση τηςαυτοκτονικότητας. Η μείωση αυτή απαιτεί στοχευμένες δράσεις για την υποστήριξη των ευάλωτων ομάδων και ειδικά των ψυχικά ασθενών που δέχονται δυσανάλογα υψηλή πίεση από την κρίση.

Δυστυχώς οι ευρύτατα διαδεδομένες δράσεις των ομιλιών, επιμορφώσεων συγκεκριμένων επαγγελματικών ομάδων (gatekeepers), τηλεφωνικών γραμμών βοήθειας κτλ δεν έχουν αποδώσει πραγματικά και μετρήσιμα θετικά αποτελέσματα.

Δυστυχώς σήμερα υπάρχει μια διεθνής συζήτηση που περίπου υπονοεί ότι κάθε άνθρωπος κινδυνεύει να αυτοκτονήσει λόγω της οικονομικής κρίσης, χωρίς να πάσχει από ψυχική νόσο, απλά εξαιτίας της υψηλής πίεσης που μπορεί να δεχθεί. Αυτό έχει ώς συνέπεια το συμπέρασμα ότι γενικά μέτρα θα μπορούσαν να αποδώσουν αντί για ειδικά και στοχευμένα.

Η γενική μείωση της ανεργίας αρκεί και δε χρειάζονται στοχευμένες υποστηρικτικές δράσεις. Η προσέγγιση αυτή αποτελεί απλά ένα «αντίστροφο στίγμα».

Ενώ το συνηθισμένο στίγμα που συνοδεύει την ψυχική νόσο τονίζει το «άρρωστο» και περιθωριοποιεί τον ασθενή, το αντίστροφο στίγμα τείνει να μην αναγνωρίζει το δικαίωμα του ασθενούς σε στοχευμένη και ειδική φροντίδα, καθώς ουσιαστικά του αρνείται τη θέση του «ασθενούς» αυτή καθαυτή.

Με αυτό τον τρόπο ένα ψυχιατρικό πρόβλημα βαφτίζεται ως οικονομικο-κοινωνικο-πολιτικό και αντιμετωπίζεται με αντίστοιχα αλλά ακατάλληλα μέτρα.

Δεν είναι η πρώτη φορά που συμβαίνει κάτι τέτοιο. Είναι ακριβώς ο τύπος του αποκλεισμού μέσω της κοινοτυποποίησης (banalization) που οδήγησε σε άλλες χώρες μεγάλους αριθμούς βαριά ψυχικά ασθενών στις φυλακές ή άστεγους στο δρόμο αντί σε θεραπευτικά ιδρύματα. Και σε αυτές τις περιπτώσεις τα ψυχιατρικά τουςπροβλήματα βαφτίστηκαν «κοινωνικά».

Κωνσταντίνος Ν Φουντουλάκης,

Αναπληρωτής Καθηγητής Ψυχιατρικής ΑΠΘ,

kfount@med.auth.gr

Posted Σεπτεμβρίου 12, 2015 by msofcrete in Medicine

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Frances Oldham Kelsey, F.D.A. Stickler Who Saved U.S. Babies From Thalidomide, Dies at 101   Leave a comment

AUG. 7, 2015

The sedative was Kevadon, and the application to market it in America reached the new medical officer at the Food and Drug Administration in September 1960. The drug had already been sold to pregnant women in Europe for morning sickness, and the application seemed routine, ready for the rubber stamp.

But some data on the drug’s safety troubled Dr. Frances Oldham Kelsey, a former family doctor and teacher in South Dakota who had just taken the F.D.A. job in Washington, reviewing requests to license new drugs. She asked the manufacturer, the William S. Merrell Company of Cincinnati, for more information.
Thus began a fateful test of wills. Merrell responded. Dr. Kelsey wanted more. Merrell complained to Dr. Kelsey’s bosses, calling her a petty bureaucrat. She persisted. On it went. But by late 1961, the terrible evidence was pouring in. The drug — better known by its generic name, thalidomide — was causing thousands of babies in Europe, Britain, Canada and the Middle East to be born with flipperlike arms and legs and other defects.

Dr. Kelsey reshaped American drug safety rules. Credit Associated Press
Dr. Kelsey, who died on Friday at the age of 101, became a 20th-century American heroine for her role in the thalidomide case, celebrated not only for her vigilance, which spared the United States from widespread birth deformities, but also for giving rise to modern laws regulating pharmaceuticals.

She was hailed by citizens’ groups and awarded honorary degrees. Congress bestowed on her a medal for service to humanity and passed legislation requiring drug makers to prove that new products were safe and effective before marketing them. President John F. Kennedy signed the landmark law that she had inspired, and presented her with the nation’s highest federal civilian service award.

“Her exceptional judgment in evaluating a new drug for safety for human use has prevented a major tragedy of birth deformities in the United States,” Kennedy said at a White House ceremony.

Dr. Kelsey was appointed to the Order of Canada last month and presented with the honor in a private ceremony the day before her death at her daughter Christine Kelsey’s home in London, Ontario, where Dr. Kelsey had been living, according to John Swann, a historian at the F.D.A. and a friend of hers.

In 1962, the F.D.A. set up a branch to test and regulate new drugs, and Dr. Kelsey was put in charge of it. Later, she became director of the agency’s Office of Scientific Investigations, and in a distinguished 45-year career with the F.D.A. helped rewrite the nation’s medical-testing regulations, strengthening protections for people and against medical conflicts of interest. The rules have been adopted worldwide.

She was born Frances Oldham in Cobble Hill, on Vancouver Island in British Columbia, on July 24, 1914, one of three children of Frank and Katherine Stuart Oldham. Frances attended schools in Victoria and McGill University in Montreal, earning a bachelor’s degree in 1934 and a master’s in science in 1935. In 1936, she enrolled at the University of Chicago, where she earned a doctorate in pharmacology in 1938. She joined the faculty that year and became an assistant professor of pharmacology.

She and Dr. Fremont Ellis Kelsey, a professor in the university’s pharmacology department, married in 1943. He became a special assistant to the surgeon general in 1962 and died in 1966. The couple had two daughters.

Besides her daughter Christine, Dr. Kelsey is survived by another daughter Susan Duffield, two grandsons and a sister.

Dr. Kelsey received her medical degree from the University of Chicago in 1950. She was an editorial associate for the American Medical Association Journal in Chicago for two years before the Kelseys moved to Vermillion, S.D. He became chairman of physiology and pharmacology at the University of South Dakota medical school. From 1954 to 1957, she taught pharmacology there, and for the next three years was in private medical practice. She became a naturalized American in 1956.
Dr. Kelsey, in 2010, worked for the F.D.A. for 45 years. Credit Brendan Smialowski for The New York Times
Her husband’s appointment to a post at the National Institutes of Health took the family to Washington in 1960. She accepted the F.D.A. job evaluating applications for licenses to market new drugs. Merrell’s was one of the first to cross her desk.

The company made glowing claims for Kevadon’s safety and effectiveness. It had been developed in West Germany, and since 1957 had been widely sold in Europe and elsewhere as an excellent sedative, Merrell said, giving prompt, deep, natural sleep without hangovers. Moreover, doctors had recently been prescribing it to women to suppress nausea in pregnancy.

Laws governing new drugs had been on the books for decades but were not always rigorously enforced, and F.D.A. approval was often routine. But Dr. Kelsey, working with a chemist and a pharmacologist, found the evidence for Merrell’s claims about Kevadon to be insufficient. She withheld approval and asked Merrell for more data on toxicity, strength and purity.
Merrell stood to make millions and was anxious to get moving. It had tons of Kevadon in warehouses, ready for marketing, and 1,000 American doctors had already been given samples for “investigational” research. The company supplied more data, but also mounted a campaign to pressure Dr. Kelsey. Letters, calls and visits from Merrell executives ensued. She was called a fussy, stubborn, unreasonable bureaucrat.

But she refused to be hurried, insisting that there was insufficient proof. In February 1961, she read a letter in The British Medical Journal from a doctor who suggested that thalidomide might be causing a numbing condition in arms and legs. She notified Merrell, and the company began its own inquiry. In May, she told Merrell that the drug might affect the limbs of fetuses. The company called the evidence inconclusive.

“I had the feeling,” she wrote after a meeting with company executives, “that they were at no time being wholly frank with me, and that this attitude has obtained in all our conferences, etc., regarding this drug.”

Six months later, European reports indicated that the drug was linked to an epidemic of phocomelia, a rare but monstrous malformation of limbs in newborns. Merrell withdrew its application as reports of the births of “thalidomide babies” came in from many countries. Kevadon samples given to American doctors were traced, but not all were retrieved. Seventeen births of babies with deformities were reported in the United States, according to the F.D.A.

Eventually researchers learned that thalidomide crossed the placental barrier and retarded development of the fetus, whose drug-metabolizing enzymes are undeveloped. No one knows how many babies were affected by thalidomide, but estimates range into the tens of thousands in Europe alone. Many were born without arms or legs, some with no limbs or with withered appendages protruding directly from the trunk. Some had no external ears or deformities of the eyes, the esophagus or intestinal tracts.
After an article in The Washington Post led to global coverage, Dr. Kelsey was hailed as a hero. She insisted that her pharmacologist, Oyam Jiro, and chemist, Lee Geismar, as well as her superiors share the credit. But attention focused on her partly because the Kennedy administration and its allies in Congress wanted to use the case to pass stronger drug regulations. The 1962 law required tighter proof of the safety and effectiveness of new drugs, full disclosure of side effects and generic names, and swift removal of unsafe drugs from the market.

When she became widely known, Dr. Kelsey, a tall, graying woman who spoke softly and never wore cosmetics, seemed modest to the point of shyness. But she testified in Congress, spoke to women’s groups and at college forums and gradually became accustomed to the spotlight.

In 2000 Dr. Kelsey was inducted into the National Women’s Hall of Fame, joining the ranks of Helen Keller, Eleanor Roosevelt, Margaret Mead and other luminaries. She retired in 2005, and in 2010 was honored by Dr. Margaret Hamburg, then the F.D.A. administrator, as the first recipient of an award that continues to be given annually in her name.

Posted Αύγουστος 8, 2015 by msofcrete in Medicine

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A HUMAN TYPE OF ECHOLOCATION HELPS THE BLIND   Leave a comment

The space before the blind man was a riddle he needed to solve. Was he facing a house, a car, a hedge, a fence, a tree or open space?

Ryo Hirosawa pushed the tip of his tongue hard to his palate, and made a sharp click.

He tried to focus on the form and timing of the click’s echo as it came back to his ears, as fast as a blink.

But he couldn’t quite decipher the shape of the sound. Was is scattered, as if it hit foliage? Was it a clean pulse ricocheting off a stucco wall? Was it hitting multiple objects and coming back in fragments, milliseconds apart?

«Are there solid objects in here or are there sparse objects in here?» asked his instructor, Brian Bushway.

Hirosawa kept clicking, and edges in the acoustic landscape gradually began to emerge as a faint picture.

«There is a tree, I think, here, which is tall, and I see a house behind,» Hirosawa said.

They stepped into the yard to find out whether he was right. Bushway tapped his cane against the tree trunk and reached up to grab a branch and shake the leaves. «Sparse objects,» he said. «Feel it, know what it sounds like.»

He knocked the wood panel of a wall.

«A house,» Bushway said. «Awesome, very good.»

::

This quiet cul-de-sac of old bungalows in Long Beach is at the center of an unorthodox movement to teach blind people to navigate using tongue clicks for orientation.

Daniel Kish, 49, lives and runs World Access for the Blind here, with Bushway as one of his two main instructors.

Their students learn to better perceive the space before them, sending out sonar, like dolphins or bats, to get an acoustic read on their surroundings — a human form of echolocation.

Kish has worked with numerous scientists to study how the brain accomplishes this. A brain imaging study on Kish and Bushway by researchers at the University of Western Ontario found that when they were echolocating they were processing acoustic information in the spatial-visual part of the brain, not the part normally associated with hearing.

On this recent morning, Kish had just returned from giving a TED talk in Vancouver and was working on a textbook about this technique, which he calls flash sonar.

I was imaging acoustically. The brain creates images whether you send it patterns of light or patterns of sound.
– Brian Bushway
Kish had retinal cancer when he was born, and lost both eyes soon after his first birthday. He unconsciously began making clicking noises with his tongue to navigate, as other blind children often do. But unlike many other parents, who worried that their child might be ostracized for sounding weird, his mother and father didn’t discourage him from clicking, and let him roam the neighborhood in Placentia like any other 1970s kid.

He rode bikes, climbed trees and delivered his mother’s Avon catalogs to neighbors near and far. He didn’t understand how the clicking was helping him until he was 11, when a friend pointed out that he was doing what bats do.

«I hadn’t thought about it,» he said. «I was just a squirrelly kid who liked to be active.»

::

Bushway is pure Southern California: shaggy and casual, at home in shorts; enjoys a nice Mexican beer at lunch. He lost his eyesight from optic nerve atrophy in the eighth grade. But walking through school in Mission Viejo, he could still see columns in the hallway, even count them. He was baffled. He closed his eyes and they were still there.

 

When he met Kish in 1996 at a pancake breakfast at the Braille Institute in Anaheim, he told him about this phenomenon. Kish concluded his brain was forming a spatial image from the ambient sound reflecting off and sluicing through the columns.

«I was imaging acoustically,» Bushway, 32, said. «The brain creates images whether you send it patterns of light or patterns of sound.»

Kish, by then a mobility and orientation instructor, started working with him to process those sounds, but also taught him to use the click when the ambient sound didn’t offer enough information.

Bushway, who had loved to play ice hockey and mountain bike, was inspired to see Kish breaking through the barriers that he was terrified would cage him in.

«Wow, this guy lives his life independently,» Bushway recalled thinking. «He does all these fun activities. He could ride a bike. He likes walking and exploring neighborhoods and playing laser tag.»

Kish showed Bushway how to skateboard, using a long cane to read the road surface and curbs, and clicking to spot parked cars, intersections and turns ahead.
Ryo Hirosawa, right, pauses to snap a photo with instructor Brian Bushway during a lesson in echolocation to help him examine the environment. Both Hirosawa and Bushway are blind. (Robert Gauthier, Los Angeles Times)
With the help of another instructor, Andy Griffin, who could see, they started mountain-biking trails and fire roads in the Santa Ana Mountains.

Griffin would lead, with zip ties around his spokes to send out a blizzard of clicks. Kish and Bushway would follow making their own clicks to locate larger objects such as trees and boulders.

In this sonic caravan, they could charge over roots, ruts and rocks as speedily as most mountain bikers — with a few more scrapes to show.

::

In 2001, Kish established World Access for the Blind to teach the clicking technique. Since then, his team has traveled to more than 34 countries. Kish’s other instructor, Juan Ruiz, won a Guinness World Record for the «Fastest 10 obstacle slalom on bicycle — blindfolded.» He rode 66 feet with the obstacles placed at random in 25.43 seconds.
They began getting news coverage around the world. Ripley’s Believe It or Not! and many media organizations called Kish a «real life Batman.»

Kish’s high profile drew some criticism within the world of blind advocacy. The main complaint was that the clicking would seem off-putting to the public, leading to further stigmatization. Another was that all the «batman» hoopla reinforced a misconception that blind people have mysterious powers.

The National Federation of the Blind is neutral on Kish’s work. «All blind people use echolocation to an extent,» said Chris Danielson, a spokesman for the federation. «Mr. Kish has a unique way of doing it that seems to work for him and others.»

He said many blind people tap their canes for a similar effect in certain circumstances.

Kish says the click is more effective because it is directional, and doesn’t change with the surface of the ground or the angle of the cane.

Brandon Shin, 17, of Hancock Park came to Kish for help two years ago after slowly losing his sight. His father was extremely dubious, suspecting a snake oil salesman. But Shin says he «harangued» his parents so much, they let him have lessons.
Now he clicks all the time, and recently hiked Runyon Canyon by himself. «Just the cane and my clicking,» he said.

He says some kids at school made fun of him. «Oh, are you using that weird African language with the tongue clicking?» one snickered, he said. But others have been genuinely fascinated with it.

His father, Mike Shin, says his own skepticism has faded as he’s watched his son maneuver around obstacles as though he could see them.
Daniel Kish, right, with colleague Brian Bushway, developed a human type of echolocation using a clicking sound that he now teaches blind people from around the world. (Robert Gauthier, Los Angeles Times)
«Sonar has given Brandon self-esteem and courage,» he said. «From a parent’s point of view, we’re worried he’ll get hurt. But we’re proud. He’s doing it better than we expected.»

::

In Long Beach, Hirosawa was still struggling to catch the fast-fleeting echo. If he stood five feet from a wall, the echo followed his click in less than 1/100th of a second.

Bushway knows it’s difficult.

«So the hierarchy is, visual information is the loudest, then tactile information, then acoustic information,» he explained. «So we’re asking the brain to really start paying attention to really subtle stimuli in the environment.»

Hirosawa came to Long Beach from a small village near Fukuoka in Japan for hours of personal training. It was his second trip here.

At home, he said, his parents lock him in the house because they are so concerned for his safety. He said blind people in his country aren’t autonomous. He sneaked out when he could, but the main path into town follows a river, and he fell in several times.

He and Bushway walked and crossed a busier street and turned back, aiming their clicks to the corner. The echo was sharp, almost metallic.

 

«There is a house,» Hirosawa said. «The surface is really smooth.»

Bushway told him to take note of the unique echo from that house, so when he was walking back he would know to turn down that lane to reach Kish’s bungalow. «That’s a great acoustic landmark there.»

Hirosawa kept clicking, taking in the distinctiveness of the sound.

The next time he sneaked out of his parents’ house, he would listen for similar spots. And he’d have sonic breadcrumbs to lead him back home.

joe.mozingo@latimes.com

Copyright © 2015, Los Angeles Times

Posted Αύγουστος 2, 2015 by msofcrete in Medicine

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