Dad Brings Light to UCLA!

Today my Dad spoke to a group of UCLA medical residents at the invitation of wonderful Dr. Avidan. The hope (I think) was obviously to educate them, but also to put a name and face to a disorder most students just read about. My Mom and I accompanied my Dad and I can't express how proud I felt of him as he told his story with such honesty and openness. Who would have thought all those years ago when my Dad was convinced he was going insane that he would be sharing his experience and enlighteneing the minds (and hopefully hearts) of future M.D.s?

Dr. Avidan also presented a very informative PowerPoint presentation on RBD. He then asked my Mom and I to speak about what it's been like to live with and love someone who suffers from the disorder. I felt so emotional during the whole thing that I'm afraid I could barely find the words. I just tried to convey how heartbreaking it was to see my Dad's health decline, to have such few answers and to be met with such disregard from so many medical professionals we saw. That is, until we found Dr. Avidan.

As we left, I told my Dad, "Thanks to you there are now 20 future doctors who will go out into the world and have a better understanding of what RBD is". Quite a beautiful thing if you ask me.

An Obvious Need for Education

My Dad was hospitalized for an appendectomy this week. One of my main concerns was that the surgeon and anesthesiologist be aware of his RBD. So when they came in to speak with us prior to the surgery my Mom and I told them about it and sure enough, we were met with blank stares. Neither of them had ever heard of RBD. And to be quite honest, neither of them seemed to be particularly interested either. Oh wait, one of them did make note of it by writing it on his palm (!!!!!).

Frankly, I shouldn't have been all that surprised. Several years ago we took my Dad to see one of the supposed top neurologists in the state and he said he had never heard of such a thing. I actually had to email him information on RBD after our appointment.

So I ask... WHEN WILL THE MEDICAL SCHOOLS GIVE MORE EDUCATION ON THIS CONDITION?

RBD Goes Off-Broadway

This could be one of the coolest things ever! Comedian Mike Barbiglia (who was diagnosed with RBD) is sharing his journey through his struggles with sleep disorders in an off-broadway show called Sleepwalking With Me! Also check out the editorial at Advance for Sleep for his complete story.

RBD & Glycine

I came across this article today which was published in the 3/26/08 edition of the Journal of Neuroscience. If nothing else, I just love that RBD research is alive and kicking (no pun intended)! Click on the title to go directly to the article.

Glycine Could Be Key To REM Sleep Behavior Disorder
Article Date: 28 Mar 2008 - 1:00 PDT

There is new promise on the horizon for those who suffer from REM Sleep Behaviour Disorder (RBD) according to researchers at the University of Toronto.

RDB, a neurological disorder that causes violent twitches and muscle contractions during rapid eye-movement (REM) sleep, can lead to serious injuries. John Peever, Assistant Professor at the University of Toronto, discovered that an inhibitory brain chemical called glycine is responsible for actively suppressing muscle twitches in REM sleep. Deficiency in glycine levels in the brain cells that control muscles (motoneurons) was found to cause the violent muscle contractions that mimic the primary symptom of RBD.

"This study shows the mechanism that suppresses muscles twitches in REM sleep and this will lead to better treatments and potential cures for this disorder," says Peever. "Treating REM sleep disorder may have much broader implications, since within five to eight years of being diagnosed with this disorder, 60-80% of individuals eventually develop Parkinson's disease."
----------------------------
Article adapted by Medical News Today from original press release.
The study findings are published in the March 26th edition of the Journal of Neuroscience.
For more information, please contact:
John Peever
Assistant Professor
Department of Physiology & Cell & Systems Biology

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

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

My Post to a Parasomnia Message Board

The following was a post I wrote (one of many actually!) to a Parasomnia Message Board in an attempt to get some online support or help.

Post Subject: My Dad's RBD Experience
Posted: December 24, 2007

First, my heart goes out to all who suffer from or love someone with a parasomnia, particularly RBD as that's the disorder I am most familiar with. I know all too well the emotional and physical pain it can bring to all involved.

My Dad is 64 and was diagnosed with RBD about 6 years ago. His story is very similar to those described. He's done everything from jump through a window, to cut open his head from throwing himself out of bed, to severely damage his hands by beating up the floor and the walls, to throw furniture, to most devastating of all to him, harm my Mom when they were sharing a bed (which they no longer can do because of the danger this disorder can pose to bed partners).

Aside from the sheer terror he felt, he was also exhausted, confused, growing increasingly depressed and truly feared he was losing his mind. It took 3 doctors before one even suggested RBD and then a sleep study confirmed it. He was prescribed Klonopin and then later they added Remeron, both of which he is still taking to date. He was also prescribed Cymbalta for depression. He was also diagnosed with sleep apnea and put on a CPAP machine.

Another thing perhaps worth mentioning is that is was discovered that my Dad has a large (literally the size of a pear) arachnoid cyst in his right frontal lobe. It is benign and they believe it has probably been there since birth, although obviously they can't be sure. Whether it has anything to do with the RBD they have no idea and I haven't been able to find much information saying that it in fact could.

Today my Dad's sleep has definitely improved, but by no means is his RBD a non-issue. He still has episodes about 4-5 x month. They're virtually impossible to predict, but there does seem to be a relationship between them and stress. Whether that's true or not, I don't know, but it certainly seems that way. He sleeps in a different room than my Mom and that room is pretty much barren except for a table and a mattress on the floor on which he sleeps. Every night he wears thick, padded gloves to bed to protect his hands in case he beats the floor and he often ties his ankles and his wrists together in an effort to restrain himself and thus prevent himself from being able to cause himself any physical harm. Strange as it sounds, he actually feels better when he restrains himself because then at least he knows he'll be somewhat protected from himself should he have an episode. On top of all that he's also hooked up to the CPAP. It's a sad sight to say the least.

I hope both to find and offer support here in this forum. Of course I also wish to learn more, to keep abreast of any new research and to offer as much help as I possible can to my wonderful Dad.

What RBD is NOT

• RBD is not curable.
• RBD is not a psychological disorder.
• RBD is not a psychiatric disorder.
• RBD is not a weakness of character.
• RBD is not the same as night terrors or nightmares.
• RBD is not the same as sleepwalking.
• RBD is not something that only occurs in men.
• RBD is not always a precursor to neurodegenerative diseases.
• RBD is not something to be ashamed of.
• RBD is not something that a person can control.
• RBD is not something to ignore or take lightly.
• RBD is not caused by repressed emotions, feelings (i.e., anger), and/or unresolved issues.
• RBD is not something that anyone should have to face alone.

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.