Michael Corke was a music teacher in Chicago. Shortly after he turned 40, he began to have trouble falling asleep. The insomnia grew worse and worse, until he finally could not sleep at all. Corke had Fatal Familial Insomnia, a rare genetic disorder that doesn't emerge until the person is an adult, somewhere between the ages of 30 and 60. There is no known trigger. If one parent has the gene, each child has a 50% chance of inheriting it. The person simply becomes less and less able to go to sleep. Sufferers may survive up to three years, but they always do die. Michael Corke lasted less than one year: he died after being hospitalized and going without sleep for six months.
It is very rare: about 40 families worldwide have been identified with the gene (most of them in Italy). It was medically identified in the 1970s, but family stories of people gradually becoming totally sleepless and then dying of it go back many generations in at least one of the families studied. Research has linked the mutation to disruption of the activity of prions in the brain, linking the disease with other prion diseases like scrapie, mad cow disease, and Creutzfeldt-Jakob disease.
It is odd that I was unable to find much information about Michael Corke; there are a number of mentions of his case on the web but they are always worded similarly and never include more information that what you see above: no date of birth or death, and no pictures. There is an exhibition on right now in London at the Wellcome Collection an exhibit about sleep that includes video footage of Corke. If any of you have seen it or are willing to go see it (it ends March 2008), please bookmark this page and add a comment about it.
Sources: Wellcome Museum, Fatal Familial Insomnia, The Man Who Never Slept
19 comments:
There is an excellent book called "The Family That Couldn't Sleep" by D T Max that goes into much greater detail about FFI and prions (the causative factor) as well as the story behind one Italian family that has suffered from the disease for centuries. http://www.amazon.com/Family-That-Couldnt-Sleep-Medical/dp/1400062454
Mr. Corke was my music teacher in Junior High School. I was sad to hear the news of him passing to this rare disorder.
I remember seeing a TV show in the past 10 years or so about Mr. Corke. I thought it was on the Discovery or Learning channel, but can't find any reference to it now.
I mentioned the DT Max book earlier which has a huge amount of information on this subject. Please also see my webpage on sleep deprivation which talks about FFI: http://www.world-of-lucid-dreaming.com/
sleep-deprivation.html
The original documentary was made by the BBC in the UK, possibly entitled "The Man Who Never Slept". One year prior, there was a TV show called "Vital Signs: Dying To Sleep" hosted by Robert Urich. Both were picked up by the Discovery Health Channel.
The case of Michel Corke's family is especially compelling because part of the family is estranged and must now be tracked down. There is a blood test to diagnose the disease - however there is no guarantee that the mutated gene will be activated.
Thanks, Rebecca, that is helpful.
Incredibly sad. I was one of Mr. Corke's students too.
We watched a video on sleep disorders in a high schol psychology class I took my senior year. That was over four years ago, but the very short clip of video footage of Corke shown has stuck with me to this day. Corke's condition after several months of not being able to sleep was the single most disturbing thing I have seen in my life.
I could not imagine dying in this way. Such a mysterious condition.
My name is JoAnn Corke Mosby and Michel Corke was my brother. He was 42 when he died. The gene was confirmed to be from our natural father's side of the family from whom we were estranged. The family name was Thomas from Milford, IL. We have now lost two first cousins - Khris & Kacy Bassham and a 2nd cousin to this terrible disease. I continue to try to find my half-brothers as that may carry this gene and have no knowledge. They are the sons of Earl Thomas formerly of Milford, IL. I can be contacted at jomounicorn@cs.com
A side note:
To all of his former students who have written - God Bless you all! You were his children - his family and he adored all of you!!
Mr. Corke was also my music teacher from back in the early 80's he was always so mean and did not have any patience. I remember him making me cry in the 4th grade. I wanted so badly to quit band all because of him. I am now a teacher myself and because of him I am patient with my students and realize that they all learn in different ways. I do not have good memories of Mr. Corke However, because of him I treat all of my students with respect and will never make any of them feel the way I did that day at school. I was a good kid. I just was nervous and could not always play every note up to Mr. Corke's standards.
I knew Mike for quite a few years and was vice pres. of the band parents org. at the Jr. High. I knew he was temprimental and often abrasive, but he was a consumate musician and had a lighter side that people did not often see. I was extremely sad to hear of this terrible affliction that caused his death. I did see the documentary many yars ago and saddened me even more that his talent could no longer be put to use. He may have been a rough educator, but then again, life is rough and I hope of some of those old Brookwood students who thought of him as an ogre, will look back and remember that he gave them courage to face the real world as the adults that they are today.
Mr. Corke was my band director in the mid to late 70s, and I remember him being a very nice teacher. Perhaps as his disease progressed (and sleep deprivation set in), he lost his patience more often. I cannot think of a more horrible way to encounter your own death. But I certainly have nothing but fond memories of Mr. Corke.
As Mick's sister, I can attest to the fact that some times he could be abrasive. With his students, he said that some times he saw something in them that they could see in themselves and it would frustrate him when he couldn't help them see beyond their fears to find what they were hiding inside. Bottom line - he adored all of his students. My family and I would like to hear from any of his former students or fellow teachers. Please write to me at jomounicorn@cs.com
I was truly saddened to hear from a former classmate that Mr. Corke passed away from this rare disease. Thank you for posting this so that I could learn more.
I was a student of Mr. Corke's at Memorial Junior High School. He was my choir director. He had a wonderful sense of humor and truly loved his students. I remember him attending one of my High School Concert Choir functions a few years later and had nothing but praise for a very BAD show. Then years later, after I was married, I tracked him down and had some wonderful conversations with him about life, losing, and keeping the faith. It was obvious he thought of us as his children as he signed our yearbooks and birthday cards: AKA Dad.
To his family: He was a great role model and I am definitely much better for having known him.
I have been to the site many times checking on the comments and unsure whether I should post something. I am Mike's (this is how I knew him) step-daughter. He married my mother when I was 13 and passed away when I was 19. Mike was always kind and patient with me. This is saying a lot considering I knew him during my teen years which I certainly do not consider my most lovable!Toward the end, while he was still working, I would drive him and often pick him up from school since he was unable to drive safely. I am glad I had that time with him even though he spent much of it trying to sleep or in a bit of a daze. Losing him and watching him suffer was devastating for me, my brother and most importantly my mother. She was never the same after his death. I hope no one else in his family develops this disease. My mother died this past December and I hope they are together again. He was a good man.
I'm touched by all these comments. Thank you especially to family members and students who have written in. It is a moving reminder that every one of the individuals I've written about in this blog was a full person whose presence affected many other people in all kinds of different ways. Thank you.
To Keri and Lee I am sorry that you have lost your mother. I am sure that she and Mick are again together and now they both sleep in peace. My family appreciates your kind words about your relationship with 'Mike'. To him, you were not his'step' children - you were his children and he loved you both.
I continue to try to find my half siblings - not to find family - but to warn them about what they may endure.
Again to his students and friends, my family would appreciate hearing from any of you jomounicorn@cs.com
It is almost 17 years since Mick passed away from this little known disease. This blog as well as a few others has helped the family immensely in getting information out on the disease as well as enabling those that cared about Mick to reach out to others. It is my hope that this blog will continue to be available to those that wish to comment on Mick's life or this disease.
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