Contributor Lynne Lamberg – 5-part Series: Improving Sleep and Alertness in the Blind

Part 1: It’s not just insomnia

Dan Roy, who is 52 years old, and congenitally blind, has experienced recurring bouts of troubled sleep and daytime fatigue since childhood. These alternate with episodes of good sleep and alertness.

“Sometimes I fall asleep and stay asleep. Other times I wake up after a few hours and can’t get back to sleep,” he reports. “I may feel tired at different times of day, and still not be able to fall asleep at night.”

Over the years, Roy sought help from several physicians, to no avail.

“They told me, ‘You’re not sleeping right. You must be staying up too late or sleeping too late,’” recalls Roy, who lives in Des Plaines, Illinois.

A Braille translator for Horizons for the Blind, Roy said he compensates for times when he feels less productive by working harder when his energy is high. “I try to fight through my sleepiness,” he said.

“It’s like living with arthritis,” he added. “That doesn’t mean I wouldn’t like to fix it.”

Melanie Brunson, a lawyer and executive director of the American Council of the Blind in Arlington, Virginia, has been blind since birth. Born prematurely, and given oxygen, she developed retrolental fibroplasia (RLF), today called retinopathy of prematurity.

Now 57 years old, Brunson reports she recognized only 15 or 20 years ago that variations in her sleep and alertness followed a predictable pattern.

“I may be fine for several months,” she said. “Then I will have trouble falling asleep and staying asleep again.” Daytime sleepiness occasionally proves overwhelming. Fortunately, she said, she can tell her assistant, “I’m closing the door to my office for 30 minutes. I have to take a nap.”

Some members of the blind community send email at 3:30 a.m. and joke about insomnia, Brunson said. Many avoid complaining about daytime fatigue, however. They don’t want to imply that they fall asleep on the job.

Roy and Brunson both found their way to Boston’s Brigham and Women’s Hospital, and to Harvard Medical School neuroscientist Steven Lockley. Lockley has been studying disturbances of the sleep/wake cycle in blind people for the past 15 years, first in England, and more recently, in the US.

The symptoms Roy and Brunson experience characterize what sleep specialists call non-24-hour sleep-wake disorder (N24HSWD). This disorder occurs far more often in people who are blind than in those who are sighted. An estimated 50 000 to 100 000 blind individuals in the US, and140 000 in Europe, have N24HSWD.

Lockley heads a multi-center clinical trial to determine if a new medication is both safe and effective in helping totally blind people obtain regular and sufficient sleep at their preferred sleep time.

The researchers are seeking study participants. More information is available at http://24sleepwake.com/, or at http://clinicaltrials.gov/ by searching on “N24HSWD.”

Part 2 of this report will discuss how the body clock works and why blind people experience N24HSWD.

Link to Introduction from the Editor: http://www.matildaziegler.com/2011/09/26/letter-from-the-editor-september-26-2011/

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