Dr. Carlos H. Schenck, M.D. on KCBS, CBS 2

The legendary Dr. Carlos H. Schenck, M.D. himself spoke out on KCBS yesterday! If you missed the story, you can read the transcript and view the video clip by clicking on the link below:

Violent Sleep Disorder Can Make Life a Nightmare

And of course, a wealth of information can be also found at Dr. Schenck's website, Parasomnias-RBD.com. There you will also find information on his books and his DVD entitled "Sleep Runners".

I've said it before and I'll say it again and again... No words could ever express my family's appreciation for Dr. Schenck's extraordinary expertise and kindness and efforts to bring light to RBD!

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.

There is Help... and Hope!

During the course of several months I saw my Dad's health (emotional & physical) decline. Not only was he was sleeping poorly but he was exhibiting extreme fatigue during the day which was consequently manifesting itself in depression. Something had to be done. And so in a desperate attempt to find some help, I contacted Dr. Carlos H. Schenck and asked for a referral in our area. He recommended a Dr. Alon Y. Avidan at UCLA Medical Center.

I could go on and on and on (and on!) about our experience with Dr. Avidan, but for the sake of brevity I'll share an email I sent to to Dr. Schenck immediately upon returning home from the appointment which I believe sums things up nicely...

" Several months ago you were kind enough to give me a referral to Dr. Avidan for my father who has RBD. Yesterday we (my Father, Mother & I), finally met with him and I just wanted you to know how absolutely wonderful he was. Aside from the fact he felt he could help improve on my Father's present situation, he treated us with so much care, kindness, respect and dignity. It was truly a phenomenal experience and I just can not thank you enough for steering us to him. I'm getting married on Sat. and it was the greatest gift. We have so much to celebrate!"

And just for the record, my Dad is presently following the treatment outline prescribed by Dr. Avidan and I'm elated to report that he is doing better than he has in a very, very long time. His (and our) hope has been restored and I will never be able to thank Dr. Schenck and Dr. Avidan enough for their help, expertise and above all, kindness.

Melatonin for the Treatment of RBD

I first learned about the use of melatonin in the treatment of RBD in Dr. Carlos Schenck's book entitled "Sleep: The Mysteries, The Problems, And The Solutions". I literally ran to the computer and Google'd every combination of search terms involving RBD and melatonin I could think of. What I found was quite promising. But the truth is, just the fact that someone was talking about something other than Klonopin (Clonazepam) was enough to give me some much needed hope!
And the reason is this...

My Dad was put on Klonopin when he was first diagnosed. In fact, he was told it was a "absolute requirement". Initially the Klopin worked quite well, his RBD episodes decreased in intensity and frequency. But the problem was that over time his body had built-up a tolerance to it and the dose had to be continually increased. Fast forward to the time I learned about melatonin and let's just say my Dad was in BAD shape. The side effects of the increasingly higher doses of Klonopin were literally ruining his life. He was groggy, drowsy, fatigued, depressed, anxious, confused, shakey and showing blatant signs of ataxia (loss of balance & coordination). He was almost a shadow of the Dad I knew. I was beyond desperate to find an alternative.

It was at this time that I reviewed just about every website I had visited that mentioned RBD and sent out emails to everyone from the administrator of a sleep site I frequented to several health professionals. Finally someone replied and said they could put me in touch with Dr. Carlos Schenck himself! It was Christmas eve 2007 and I couldn't think of a better gift. I remember shaking when I got his email address and trying to compose an email to convey how badly I needed help without sounding like a nutcase!

Dr. Schenck replied with a referral to a specialist in our area and in answer to my question about the benefits of melatonin in the treatment of RBD (I was ready to start my Dad on it NOW!), he advised that we discuss the issue with the doctor.

Fast forward several weeks and we took my Dad to see that doctor and he literally changed my Dad's life, which you can read about here: There is Help... and Hope!

More can be read on the use of melatonin in the treatment of RBD here:

Melatonin Effects in a Patient with Severe REM Sleep Behavior Disorder

Melatonin Helps Alleviate Violent Sleep Disorder Symptoms

Melatonin for Treatment of REM Sleep Disorder in Neurologic Disorders

And also at Monika Woolsey's blog here:

Melatonin & REM Sleep Behavior Disorder

REM Sleep Behavior Disorder (RBD) Defined

There are lots of definitions available for RBD and all pretty much say the same thing (some are just a little easier to understand than others!), but here's the general idea...

REM behavior disorder (RBD) is a sleep disorder first described in 1986. Dr. Carlos Schenck is credited for identifying RBD as a new category of parasomnia (a condition that occurs during sleep and creates a disruptive event), along with Dr. Mark Mahowalk, his colleague at the University of Minnesota and the Minnesota Regional Sleep Disorders Center at Hennepin County Medical Center in Minneapolis. They published their findings on RBD in the article "Chronic Behavioral Disorders of REM Sleep: A New Category of Parasomnia" which was published in the journal "Sleep".

There is no known cause for RBD. It is, however, known to occur during rapid eye movement (REM) sleep.

Patients with RBD act out and react to situations occurring in their dreams (which are often very dramatic and/or violent), during rapid eye movement (REM) stage sleep. It is similar to other sleep disorders that involve motor activity, such as sleepwalking and periodic limb movement disorder, but unlike these conditions, RBD movements occur during rapid-eye-movement (REM) sleep, which is usually characterized by a state of atonia, or sleep paralysis.

In a person with REM sleep behavior disorder (RBD), the paralysis that normally occurs during REM sleep is incomplete or absent, allowing the person to "act out" his or her dreams. RBD is characterized by the acting out of dreams that are vivid, intense, and violent. Dream-enacting behaviors include talking, yelling, punching, kicking, sitting, jumping from bed, arm flailing, and grabbing.

Normal sleep consists of a series of REM dream episodes. They occur about every 1 ½ to 2 hours each night. This means that an RBD episode tends to first appear at least 1 ½ hours after falling asleep. Episodes may continue to occur until waking up in the morning. Active RBD episodes may appear as many as four times per night. They may also occur as rarely as once per week or per month. RBD does not normally appear during a nap.

An RBD episode often disrupts the sleep of a bed partner. This is how a person with RBD may become aware of the problem. People with RBD are not more aggressive or violent than others when awake. RBD is a medical problem. It is a neurological disorder. It is not a psychiatric disorder. People with RBD do not normally have a mental problem.

Click on the photo below for REM Behavioral Disorder's Diagnostic Criteria:


And for a more in depth explanation of RBD and it's history, I recommend this article from the Sleep Review Journal by Theresa Shumard : Defining REM Sleep Behavioral Disorder.

The National Sleep Foundation also offers an easy-to-comprehend explanation here: REM Behavior Disorder and Sleep.