My Dad on KABC, ABC 7

My Dad's story aired tonight! Click on the pic below to read the transcript or view the video at the KABC-TV website by clicking here:

'Night Terrors' Often Misdiagnosed

A special thanks again to KABC-TV Eyewitness News Los Angeles for helping bring light to RBD!

Protecting Himself

Whenever I tell my Dad's story, the part that really fascinates people is when they hear about how he would restrain himself to go to sleep. He did this in an effort to protect himself and over time he learned what worked and what didn't. I speak in the past-tense because since my Dad's new treatment began in September 2008 things have changed (for the better I'm thrilled to report!). A picture's worth a thousand words, so here we go...

This was my Dad's bedroom. Basically, it's just a mattress on the floor. Furniture, lamps, TV, etc. had to be removed because the more barren the room, the safer. Hanging to the side of the bed are his wrists restraints. Not pictured is a little night-light he kept on in case he awoke during the night. Often when he awoke from an RBD episode in pitch darkness he was frightened and disoriented. The night-light seems to help.


This is the strap my Dad used to restrain himself to the bed. It went all the way under and around the mattress and he would fasten it around his chest, much like a seatbelt.



These are the wrist and ankle restraints and ski gloves my Dad wore. The gloves were worn to protect his hands in case he pounded and punched the hard wood floor during an RBD episode. He's busted open his knuckles and barely been able close his hands from the pain on numerous occasions while trying to fight off someone attacking him in his dreams.


These are his wrist and ankle restraints, worn just like handcuffs around his wrists and ankles. He made them himself out of nylon webbing, leather and padding. The wrist restraints are the only thing my Dad still wears. And at this point it's not so much out of necessity, but for his own peace of mind. Remember, a common thread amongst people with RBD is the feeling of being afraid of hurting themselves.

RBD Safety Suggestions

Because one of the main symptoms of RBD is violent movement during sleep, one of the most important things is to take proper safety precautions. This article discusses RBD and presents some good suggestions for doing just that.

REM Sleep Behavior Disorder: Acting Out Your Dreams

All sleep disorders are inconvenient and often debilitating because we need sleep to function properly. REM Sleep Behavior Disorder, however, is one of the most difficult sleep disorders to live with.

http://www.associatedcontent.comarticle/163710/rem_sleep_behavior_disorder_acting.html

How Bad Did it Get?

I'm often asked what kinds of things my Dad has done during an RBD episode. Here's a sampling...

• He's jumped through a first floor window.

• He's suffered numerous cuts and gashes on his head from hurling himself out of bed.

• He's pounded, punched and beaten the floor and the walls to the extent that he severely busted up his knuckles and bruised his hands.

• He's yelled and screamed so loudly that he's woken the neighbors.

• He's gone head-first through a screen.

• He's woken up so disoriented and panicked that he thought he was losing his mind.

• He's thrown furniture (couches, chairs, lamps, tables, etc.) and hurled a TV across the room that was so heavy he could barely move it when he was awake.

• And most devastating of all to him, is that he's come very close to harming my Mom (unknowingly and unintentionally of course), when they were sharing a bed.

RBD & Antidepressants

Interesting articles about research from the Mayo Clinic investing a link between RBD and antidepressant use:

Antidepressants Linked With Acting Out Violent Dreams During Sleep

REM Behavior Disorder At Young Age Linked to Antidepressant Use

RBD & Neurodegenerative Disease

I would be remiss not to mention all the research that indicates RBD is often a precursor to the development of neurodegenerative diseases, such as Parkinson's Disease and Lewy Body Dementia. It was a great concern when my Dad received his diagnosis of RBD. But because of this, my Dad is evaluated annually by a neurologist. We have been so fortunate that so far, so good! It is imperative that people with RBD be routinely evaluated for signs of developing other problems.

More information can be found here:

Disturbed Sleep Tied to Parkinson's Risk

Can a Sleep Disorder Predict Parkinson's?

Sleep Disorder Related to Parkinson's Disease

Sleep Disorder Could Signal Neurological Disease: Finding could help docs spot those at risk for dementia, Parkinson's, researchers say.

Parkinson's-Related Sleep Disorders

Violent Sleep Disorder Linked to Form of Dementia

Mayo Clinic Studies Find REM Sleep Disorder is Associated with Other Features of Neurodegenerative Disorders

And I also recommend reading Dr. Carlos Schenck's comments after his appearance on ABC-TV Nightline via his website here.

Food Aggravating RBD?

Interesting article from FoodNavigator.com discussing the possible aggravating effects of chocolate (and caffeine) on RBD. My Dad was advised by Dr. Avidan to give up all caffeine, which he has done, included his beloved Mocha Chip Ice-Cream!

Chocolate: the stuff of nightmares

08-Apr-2002

Chocolate could be aggravating the sleep disorder which causes sufferers to act out violent nightmares, according to scientists in a recent New Scientist report.

The disorder, called rapid eye movement sleep behaviour disorder (RBD), affects around one in 200 people, and is more commonly experienced by men. Those affected are said to thrash about while sleeping and shout as they dream.

Robert Vorona of the Sentara Norfolk General Hospital in Norfolk, Virginia, the study leader, said that the caffeine in chocolate blocks the normal atonia process, which paralyses people during dreams, and the sleeper is more likely to move.

Vorona reports on a case-study in which the sleeping behaviour of one man was directly affected by what he had eaten previously. The man, who lashed out in his sleep during recurrent nightmares, experienced the problems after eating chocolate biscuits, ice cream or syrup.

While the symptoms were found to be a result of a former head injury in a car accident, chocolate appeared to make the problems much worse.

http://www.foodnavigator.com/Science-Nutrition/Chocolate-the-stuff-of-nightmares