[Nfbf-l] Information about sleep cycle from the Boston Globe

[Alan Dicey]

Dear Friends,

I thought you might want to share this article with friends or associates 
that are totally Blind, just in case they have this, what seems to be a very 
difficult situation.

With Best Regards,

Alan

Miami, Florida



Information about sleep cycle from the Boston Globe

When Jerry Berrier dreams, he hears and touches and smells and talks, but he 
doesn't see. Blind since birth, he rarely remembers his dreams, however, 
because his sleep has been so poor.

At 15, Berrier had both of his eyes removed and lost the little light 
perception he had as a child. Ever since, the Everett resident, now 60, has 
battled a vicious sleep cycle - a few days of sleep followed by weeks of 
hardly any. The bouts of sleeplessness come suddenly and subside without 
warning. When they hit, Berrier can't sleep more than a couple hours a 
night, no matter how tired he is.

Though physicians haven't given him a formal diagnosis, scientists believe 
he suffers from a rare condition called non-24 sleep-wake disorder, or 
"non-24." The chronic condition is characterized by a body clock that is out 
of synch with the 24-hour cycle of the Earth day.

Non-24 can affect those with normal vision, but it especially plagues the 
totally blind who can't perceive light, the strongest external signal that 
keeps the brain's sleep-wake cycle aligned to the pattern of night and day. 
Of approximately 100,000 totally blind people in the United States, anywhere 
from 55 percent to 70 percent of them may suffer from non-24, according to 
Harvard neuroscientist Steven Lockley, one of the lead researchers in an 
ongoing clinical trial investigating sleep disorders in the blind. With 25 
sites around the country, it's the largest study of non-24 to date. Berrier 
is a participant in Boston.

The toll of having an internal clock in competition with the 24-hour world 
can be high, adding another layer of challenge to life without sight.

Internal clocks run slightly longer than 24 hours. In the sighted, the clock 
is reset daily. But the totally blind lack this master reset mechanism.

"There are some people who have said to me that having this sleep problem is 
worse than being blind," Lockley said. "It's a very difficult concept for 
sighted people to imagine - what could be worse than losing your vision?"

Randy Pierce, 46, of Nashua, N.H. is also part of the Boston study. In 1989, 
one year out of college, he was struck by a mysterious neurological 
disorder. In two weeks, it had ravaged his eyes and reduced his sight to 
fuzzy tunnel vision. In 2000, he went totally blind.

That was also the year he stopped sleeping well. In the 13 years since, 
Pierce said he has averaged three to four hours of sleep a night.

"Blindness is a visible challenge but this sleep disorder is totally 
invisible. Nobody would have any idea why I felt sick or unfocused, and they 
would judge," Pierce said.

"I would feel dumb and I'm not a dumb man. I would feel lazy, and I'm not a 
lazy man. It's a very powerful invisible malady."

The cause of Pierce's sleep troubles, like Berrier's, can be traced to a 
malfunctioning body clock. The "clock" is composed of two structures deep in 
the brain, each about the size of a grain of rice. Cells in these structures 
send out waves of electrical and chemical pulses, keeping the body alert 
during the day and putting it to rest at night.

Most people's internal clocks naturally run slightly longer than 24 hours. 
Among the sighted, the clock is reset each day by signals from light-sensing 
cells in the eyes. But those who are totally blind lack this master reset 
mechanism.

In theory, a blind person with a cycle of 24.5 hours would feel ready for 
sleep 30 minutes later each day. In about three weeks - as the body's 
natural bedtime inches its way around the clock - the brain's "biological 
night" would be in the middle of the afternoon. This is when weeks of bad 
sleep suddenly strike for blind people struggling to maintain a normal 
schedule. Their fatigue is similar to that of someone traveling across time 
zones.

"If you are jet lagged you might feel this way for a few days - but you don't 
feel this way for life," said Lockley, who also works in the Division of 
Sleep Medicine at Brigham and Women's Hospital.

For Pierce, non-24 compromises the alertness and memory he said are critical 
for a blind person.

Remembering how the clothes are stacked in his closet, or where the keys 
are, or the path to an unfamiliar place become difficult during sleepless 
periods. He records reminders into his phone constantly so he won't miss 
appointments.

"As a blind guy, I have to be concentrating all the time," he said. "I have 
to remember where the door is and where the counters are just so I can get 
around."

Wenday Maeda/Globe Staff

Due to his many sleepless nights, Jerry Berrier, a technology consultant at 
Perkins

School for the Blind, often skips evening activities with friends.

For both Berrier and Pierce, maintaining social and professional lives can 
be a challenge.

Berrier, a technology consultant at the Perkins School for the Blind, has 
kept a

job for most of his life but often skips evening activities with friends. In 
sleepless

weeks, Pierce is forced to schedule a day of recuperation for every day of 
work running

his nonprofit or speaking at schools.

Over the years, both men have been diagnosed with everything from depression 
to narcolepsy

to insomnia. They both have tried a host of sleeping pills, to no avail.

There are no medications approved by the US Food and Drug Administration to 
treat

non-24. Some people have found relief from synthetic supplements of the 
hormone melatonin,

which sends a "nighttime" signal to the body clock. But the treatment doesn't 
work

for everyone.

The ongoing clinical trial is testing a candidate drug called tasimelteon 
that scientists

hope will be more effective in treating non-24.

The drug - developed by Washington, D.C.-based Vanda Pharmaceuticals

, which is paying for the study - has a similar structure to melatonin. 
Lockley said

that if approved, it will be more precisely dosed and administered than 
melatonin,

which, as a dietary supplement, is not regulated by the FDA.

Harvard scientist J. Woodland Hastings, a pioneer in studying biological 
rhythms

who is not involved in the trial, noted the importance of understanding 
exactly how

this drug is different from melatonin, beyond being patentable and thus 
potentially

profitable for Vanda.

Yet Hastings acknowledged the benefit that a prescription drug for non-24 
could have

in the medical world. "I do think a physician would be reluctant to 
prescribe melatonin

without some kind of FDA regulation," he said.

The development of an effective treatment could mean more than a good night's 
sleep

for those with non-24. According to Lockley, the disorder may interfere with 
the

body's regulation of metabolism, mood, and cognition.

Francesco Bongiorni for The Boston Globe

"If you imagine that all of the organs in the body are members of an 
orchestra playing

their own tunes, the master body clock is the conductor, synchronizing 
everyone to

play in time," Lockley said.

Berrier's wife, Elaine, said non-24 has been a part of their entire 39 years 
of married

life. Elaine, 60, is sighted, but as a retired nurse, she knows the toll of 
working

an overnight shift, which has similar effects on a person's body. She 
worries about

how decades of similar fatigue have affected her husband.

"He often only gets three hours of sleep a night - I know that can shorten a 
life,"

she said.

For Pierce, sleep loss has caused longer healing times. In the mid-2000s, he 
endured

several neurological treatments to help the region of his brain that 
controls balance.

He said that during his recuperation wounds took longer than normal to mend.

Both men are now taking tasimelteon daily, and have noticed improvement. 
They said

they plan to use the drug if it hits the market, though Pierce wonders how 
he would

afford the drug if it's expensive.

The drug hasn't worked perfectly for Berrier, but he now is more likely to 
have one

night of bad sleep rather than weeks.

Last year, while on the treatment, Pierce became the first blind person (and 
his

pup, The Mighty Quinn, the first guide dog) to climb all 48 of the 
4,000-foot peaks

in New Hampshire's White Mountains in a single winter.

He said he would have attempted the winter climbs regardless, but the extra 
sleep

made the ascents that much swifter.