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.




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