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.

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