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 (http://www.iasdreams.org/) 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 http://www.parasomnias-rbd.com.

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.

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The Big RBD Study

22 05 2011

This week, I’m joining a study for folks with ideopathic RBD. The purpose of the study is to help determine whether there is a predictable correlation between RBD and the later development of Parkinson’s Disease. Tuesday, I will have an MRI, Tuesday night a sleep study, and Wednesday, a lumbar puncture. By the end of it all, I hope to have a better picture of my own RBD, and hope that it remains ideopathic (with no association to known diseases or conditions).

I’ve been quite for the most part, but last night was an exception. I jumped out of bed and scared my wife out of her wits, then I moved to the couch and had very strange dreams … dreams of going to a hospital and being lost, having a hard time getting attention from the right people because it seems like there is nothing wrong… Maybe I’m just subconsciously looking forward to Tuesday, when I enter the RBD study in Houston. But I’m also looking forward to the day when somebody finds out what triggers RBD episodes, and how to avoid future episodes.

So what triggered this one? I’m visiting friends who are into raw foods. Everything is very healthy, but maybe there is some food combination, or some ingredient that doesn’t agree with me? I was feeling gassy before going to sleep, so maybe the internal intestinal rumblings were the trigger? Also, my host is a healer, and we discussed RBD during the day. The discussion focused on dreaming and the need to resolve deep issues, so maybe some of those issues were coming to the surface, since we’d been discussing them earlier in the day. Maybe it was the bit of a sunburn that I got walking along the headlands on a supposedly foggy day.

Anyway, it is a night that is good to have behind me. I welcome the morning light. Today, I begin a journey that leads me deeper into my exploration of RBD.





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.





RBD Redux and Double Helix Water

24 03 2011

My wife just pointed out that I really should be keeping a journal of my episodes and experience with RBD. She’s right, of course, as usual.

I was diagnosed with RBD a couple of years ago after a night at the sleep clinic, and was put on Clonazapam. It seems like that is what doctors do … look up a disease or syndrome, find the latest recommended medication, and put you right on it. Since then, not one doctor has asked me about it … they just keep refilling the prescription and send me home. No tests, no research, no nothing.

The results of this treatment have been unremarkable. I still have episodes, and they became sufficiently unpredictable that I finally had to move to sleeping on a futon on the floor so that I don’t strike anybody, and don’t injure myself. I almost broke my foot one night when I slept too near the foot of the bed and gave the leg of the bed a good swift kick, so had to move myself to where there is nothing I can kick or hit accidentally … for those who don’t know, RBD, or REM Behavior Disorder, means that I act out my dreams physically, sometimes including talking and yelling in the middle of the night. I’m never aware of these episodes, but they can be disconcerting to anyone who is trying to sleep nearby.

Notable episodes are few and far between, but they do happen … and surely there is a trigger. Something I ate, something I did … maybe post traumatic stress (I was a medic in Vietnam oh so many years ago), maybe stress. Maybe, according to the literature, lesions in the brain stem. Maybe maybe maybe, yet … RBD is listed as the most uncommon of a variety of parasomnia conditions, so nobody seems to be doing a lot of research on it.

So I started doing my own.

Two weeks ago, while attending a conference at sea, I encountered Dr. Shui Yin Lo, who I’d met a couple of years earlier just before my initial diagnosis. Dr. Lo is a qigong practitioner who is doing experiments with what he calls double-helix water. In Chinese medicine, optimum health entails maintaining a dynamic balance between the yin and yang meridians in the body. Nobody has ever been able to actually identify what qi is, even though acupuncturists have demonstrated the effectiveness of stimulating or blocking qi, and they have been doing it for as much as three thousand years. Dr. Lo theorizes that qi and meridians are related to the flow of water through the body. So I’m doing my own experiments, as part of a broader study that Dr. Lo is doing on the general efficacy of double helix water. To do so, I’m also cutting down on the clonazepam, and will soon be back to ground zero, with no medications.

The night before I started drinking double helix water twice a day (morning and before bedtime), I had an episode of RBD behavior. I smashed my fist into the bulkhead beside my bed on the ship where the conference was being held. No injury, but I did wake myself up. Then I started drinking the water, and twice had infrared scans before and after drinking 6 ounces of the water.  There were marked changes in the before and after pictures, enough to convince me to continue with the experiment.

I’ve been down to half a mg of clonazepam for a week now, and last night, for the first time (according to my wife) yelled in my sleep. I do remember dreaming and half waking to realize that my arms were waving around, but it was a gentle, unremarkable dream. Soon, I’ll try sleeping without the clonazepam, and will continue drinking the double helix water and doing qigong exercises.

If I can balance my own qi and stop the RBD activities, maybe I can end the maybe maybe maybe. Maybe there are ways to heal the syndrome rather than just accepting living with it.





40 Facts about Sleep

13 01 2009

I happened across the following through a link in the twittersphere from Perry Belcher. Thanks for bringing it to my attention, Perry, and thanks to the Australian Broadcasting Corporation for publishing it.

40 FACTS ABOUT SLEEP YOU PROBABLY DIDN’T KNOW…(OR WERE TOO TIRED TO THINK ABOUT)





REM Sleep Behavior Disorder (RBD) – Discovery

12 01 2009

Okay, I know you’re not supposed to self-diagnose. But about five years ago, my dreams became very active … or rather my body became very active while I was dreaming. No more “atonia” that keeps the body from moving during dreams.

The RBD has become more severe over time. One night, I dove out of bed, hit my chin on a side table, nearly broke my jaw, and bit through my tongue. A few times, I have hit my wife, hit the wall, kicked items that were left too near the bed, and recently I scared off a room full of folks at a hostel when I sat up and yelled incoherently in the middle of the night. So, time to do something about it.

I originally associated my active dreaming with Qigong. I started studying medical Qigong with Dr. Hong Liu, and during an advanced workshop, we learned eventually to drop the conscious control of our body movements, instead allowing the qi to flow through us and move us in ways that balanced and healed us. Master Hong warned that we had to stay grounded, and that many people who  entered into advanced states of  Qigong  displayed signs of mental illness. Was active dreaming a result of this?

Another thought … it was delayed reaction to PTSD residue from my time in the jungles of Vietnam.

I did a quick bit of research on the Internet, and now almost wish I hadn’t. Scientific American says that RBD has a high correlation to early signs of Alzheimer’s, which my mother and great grandmother both had. There is also a good chance that RBD is an early symptom of Parkinson’s, and is usually associated with brain stem deterioration. One thing it isn’t — it is not a psychological problem.

Anyway, I’ll try to blog a bit about what is happening. For starters, I have an appointment with my GP, and I’m going to ask him for a referral to a sleep clinic. I also have a new bed that makes restless sleep less disturbing to my partner.

And no jokes about RLS. This is Restless Body Syndrome, and perhaps restless brain syndrome. Maybe some L-dopa will do the trick. And almost time for the days to start getting lighter … lots of exercise in the saddle of my bike coming up. I’ll start putting in 400-500 miles a month soon. That will oxygenate my brain cells!





Advising the Obama team on healthcare

28 12 2008

The Obama transition team asked for community input on healthcare reform. Here are the questions they were asking, and my responses to them:

1.   Briefly, from your own experience, what do you perceive is the biggest problem in the health system?

 

      Healthcare is currently based on the treatment of symptoms, usually through pharmaceutical methods. The model should be moved in the direction of finding root causes of illness, and focusing on the root cause rather than focusing on symptoms. That is a matter of education, primarily. Also, people should be rewarded for proactively preventing illness, since prevention reduces dependence on the healthcare system. 

 

 

2.   How do you choose a doctor or hospital? What are your sources of information? How should public policy promote quality health care providers?

 

      I choose by asking others who they go to and who they would recommend. I rarely see a “gatekeeper” physician, preferring to take responsibility for my own health.

 

      Public policy should reward physicians who successfully move their patients to individual responsibility rather than rewarding those who see the most patients, because the “quantity, not quality” paradigm encourages the use of pharmaceutical fixes of symptoms, which eventually leads to more prolonged and burdensome end-of-life illnesses. Policy should also look at redefining laws regarding “practicing medicine without a license” to allow traditional naturopaths and health coaches more latitude in their work with clients, since they can successfully help their clients reduce their reliance on the healthcare system.

 

 

3.   Have you or your family members ever experienced difficulty paying medical bills? What do you think policy makers can do to address this problem?

 

      Haven’t yet experienced difficulty keeping up, but anticipate the possibility in the future due to family members with expensive dental problems and degenerating vision problems.

 

      No specific ideas on this one other than the obvious ones:  put a cap on medical expenses, with the cap reduced for early childhood and people on permanent disability or social security; make a higher percentage of medical expenses tax deductible and/or tax free; and provide a predefined and guaranteed level of care for all individuals (e.g. UK’s National Health Service).

 

4.   In addition to employer-based coverage, would you like the option to purchase a private plan through an insurance-exchange or a public plan like Medicare?

 

      Yes, especially to help the unemployed, self-employed, and part-time workers.

 

 

5.   Do you know how much you or your employer pays for health insurance? What should an employer’s role be in a reformed health care system?

 

      In my home state, employers are required to pay for health insurance. This keeps wages lower, makes it harder for small businesses to survive, and is a burden on all employers. I would like to see the expense spread out so that the burden is shared by all, rather than being solely the responsibility of employers.

 

      With an insurance pool, employers could be rewarded by encouraging healthy lifestyle habits among their employees, since they could purchase health insurance at a lower premium. In other words, they could buy primarily accident and emergency insurance, and would not be forced to pay for expensive medical treatments for those who should share responsibility for illness developed due to lifestyle choices (e.g. most heart disease due to poor dietary choices, lung cancer and emphysema from smoking, diabetes from poor diet and lack of exercise, some forms of arthritis, etc.) In other words, if somebody wants to smoke, drink, be obese and not exercise, they should expect to pay a higher medical premium, and if someone wants to consciously live a healthy lifestyle, they should not have to subsidize the insurance for those who do not make healthy choices.

 

      Also, insurance coverage should include a broader recognition of alternative therapies, and should include dental and vision care as a part of basic coverage.

 

 

6.   Below are examples of the types of preventive services Americans should receive. Have you gotten the prevention you should have? If not, how can public policy help?

 

      I have gotten the screenings and preventative measures I felt I should have. I have not had a flu shot and do not intend to get one in the foreseeable future, but I do use a variety of public service screenings to monitor my health and fine-tune my lifestyle choices to stay within healthy parameters.

 

 

7.   How can public policy promote healthier lifestyles?

 

      I have mentioned several items above, and have included others below:

 

·         Reduced insurance costs for those who elect healthy lifestyles

·         Remove or reduce legal restrictions on traditional naturopaths, nutritionists, health coaches and others who offer alternatives that keep people from having to rely on allopathic medicine

·         Reward physicians who wean their patients from reliance on the healthcare system

·         Do not allow pharmaceutical companies to patent natural medicines

·         Develop a creative commons for researching new medications

·         Ban public advertisements for pharmaceutical products

·         Ban payments to physicians for prescribing certain drugs

 

      Going outside of the healthcare arena:

 

·         Automobile disincentives to reward alternative means of commuting

·         A Healthy America campaign, with participation in the campaign being recognized as a form of public service