Periodic Update

9 10 2014

Thanks to a question from Laura about what happened, I think I owe folks an update. I’d sort of forgotten the blog.

At one point, I had decided to go off medications, but found that I was having more of what I call “breakthrough” episodes of RBD. So I started taking Clonazepam again, and will probably do so for the rest of my life. But there have been some interesting developments in my life with RBD.

First, I do still have episodes, but they are infrequent. One night I broke a couple of toes trying to break through a wall that happened to be in both my dreaming and waking worlds. Otherwise, no serious injuries, and nothing really dramatic to report. However, when I say nothing dramatic, I mean physically dramatic.

My investigations eventually led me to the International Association for the Study of Dreams ( where I got the idea to try lucid dreaming and intention as tools for channeling my dreams in a more productive direction. Using lucidity, I confronted the sinister presence in some of my dreams, and unmasked him as being not real. Using intention, I have learned to protect myself from dreaming about subjects that are likely to create breakthrough episodes, and I have used Shamanic journeying as a gentler way to explore the topics that seem to cause breakthroughs. So that much is partially under control. An excellent book on RBD by an IASD member is “Dreamrunner,” a novel by Clare Jay. Clare also highly recommends “Paradox Lost: Midnight in the Battleground of Sleep and Dreams,” by Carlos H. Schenck, MD. I haven’t yet read the book, but Clare says it’s available from

The other part is my visits to the RBD study in Houston. This will be my last year, since they only follow their subjects for five years. Last year, I was told that it is unlikely I will develop Parkinson’s Disease, based on what they have learned about the various biomarkers for the disease in relationship to RBD. That still leaves open the possibility of Multiple System Atrophy (MSA) and Dementia with Lewes Bodies, or other forms of neuro-cognitive decline. Or maybe I just have bad dreams!

In a discussion regarding a paper Clare Jay had written for the PsiberDreaming Conference 2014, Clare posed the question of whether a person with a parasomnia such as RBD is responsible for his or her actions during an active dreaming episode. My answer:  though maybe not legally responsible in a court of law, the person with RBD does have a responsibility to do all that is possible to ensure the safety of him or herself, and those nearby. I would call it “sleep hygiene,” or maybe more appropriately “sleep etiquette.” Ensure that anyone who sleeps nearby has a quick means of escape, or sleeps in a separate bed, or even a separate bedroom if necessary. I personally use a gentler method of what I believe was called the “bundling” board, which was a physical barrier down the middle of the bed, as well as a way to tuck the covers in so that I cannot kick my bed partner.

Meanwhile, I’m hoping that Houston gives me an all clear.


Sleep Journal 4-20-11

20 04 2011

I weaned myself off meds (Clonazapam) about a month ago just because I don’t like to take any drugs unless they are absolutely necessary, and have been sleeping quite well ever since, without any of the side-effects (drowsy mornings, sometimes drowsy afternoons, sometimes unsteady on my feet). My dreams have been more normal. But I still sleep on a futon away from furniture, away from walls, away from my wife so I don’t knock her in the middle of the night. To the best of her knowledge, I hadn’t been having any RBD episodes … until last night, that is.

Here’s what I remember … I half-woke from a dream where my feet were tangled, and found that I’d tangled the sheet around my feet. I straightened the bedding, resettled, and went back to sleep. Here’s what my wife reported.

She was awakened when I let out a loud yell. She said, “Are you alight? Are you alright?”

I answered with “Are you alright? Are you alright?”

She got up to check on me and I was half way off the futon. I threw myself completely out of bed, straightened the sheets, got back into bed, and went back to sleep, but continued to talk and thrash around. This around midnight.

There was another episode at around 3:00 am. I don’t recall that one at all. So, one disturbed night in the last month, and as usual, it was more upsetting to my wife than it was to me.

In late May, I’ll be stopping for a few days in Houston, where they are doing a study of people with ideopathic REM Behavior Disorder (iRBD). It is a longitudinal study to see whether there is a way to associate iRBD with the later development of Parkinson’s Disease (PD). RBD is a common symptom of PD, but those with RBD do not necessarily develop PD.

iRBD is not common, and my wife and I wanted to know more about it. We quickly educated ourselves with everything that was available on the Internet, but the condition begs for further understanding. Questions I have:  If there are lesions in the brain stem, can they be repaired using stem cell therapy? Can oriental medicine help, since Western medicine’s approach, to date, is to mask symptoms for as long as possible? Are there support groups for spouses of those with RBD? Would a detailed history maybe point to something that leads to the development of iRBD?

The wheels of progress move slowly, especially for a condition that is relatively rare, so finding a study that looks closely at RBD is a big plus. In Houston, they will review my sleep study, and will possibly perform another one. They will do an MRI to determine whether there are any lesions on my brain stem or anything organic that might be causing my RBD. And they will be doing a lumbar puncture so they can study my cerebral fluid … diagnostic for PD, and also to see if there are any biomarkers peculiar to RBD.

As an aside in case of the eventuality of developing PD, the VA has now recognized exposure to Agent Orange as a causative factor in PD. That means that PD can be a service-related illness, from the VA’s perspective. In 1969-1970, I was on a patrol that crossed a defoliated area near the top of Bac Mah mountain, outside of Vietnam’s ancient capitol city Hue, which means that I may have had some residual exposure to Agent Orange. Add to that the possibility (or is it probability?) of slight PTSD … the etiology of RBD, and by extension PD, is a tangled web.