The Big RBD Study

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

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

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

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

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

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

 

Sensitivity

An audience of dandelion-blowing kids gathers around to see what is so curious. They have spent part of the summer morning chasing through a field playing tag, sending dandelion umbrellas floating into the sky with a single breath, collecting ladybugs, tentatively tasting a wild berry that was not yet ripe … but now, they gathered around a new curiousity.

Stooped in the middle of the group, on center stage as it were — although the setting is in a meadow — a young girl no more than seven years old reaches out to touch the leaves of the plant she just discovered.

“Watch,” she said.

As her finger neared the leaf, the leaf quickly closed itself by folding the edges into the middle.

The other kids in the group abandoned their dandelions to look for more of the same kind of plant. Their attention did not move on to other magical bits of the day until everyone had their fill of the mysterious leaves that seemed to shrink shyly away from human contact. It was a sensitivity plant, or sensitive plant, they soon learned.

That moment had many echoes throughout the years. There was an echo when walking through a thick patch of ice plant … the polar opposite of the sensitivity plant. That was on the seashore, where the sea anenome makes a very similar gesture to the sensitivity plant as it captures food carried on the tide, closing itself upon its unsuspecting prey — as well as closing at the touch of a child’s finger. There was a strong echo of the sensitivity plant when picking a basketful of fiddle-head ferns for a salad. They had to be picked at the right season, and the right time of day, before they opened their leaves for the day. And there is a faint echo of the sensitivity plant every year as the seasons change and different facets of the natural world go into dormancy, pulling back to a protective stance.

Years later, the thread that started that day in the meadow would be revived for one of the students when he learned in a botany class that the mimosa pudica was a carnivorous plant, and when the leaves closed, the plant was hoping to enfold an insect small enough to ingest for a bit of nutrition. A magical moment of childhood resolved by finding a scientific explanation. The moment from childhood was no less magical, but the universe was one step closer to having a comfortable explanation.

Discovery seems to satisfy a deep urge in people. Something as simple as the sensitivity plant may already be known to millions of other people, but the moment when one particular child reaches out a finger for the first time and sees the plant respond to them … that is always magical, no matter when and no matter where it takes place.

That sense of wonder, that awe, is repeated in a kaleidoscope of different situations for children who are just discovering the universe on their own. The magic eventually evolves into a structured way of looking at the universe, a way of explaining away the parts that are not yet understood, or that have not yet been discovered. The world view evolves into a familiar structure, but that does not mean that there are no more surprises, no more discoveries to be made.

It just means that the way one’s mind understands the universe is sufficient at the moment. There are no overwhelming mysteries, no anomalies so obvious that they cannot be ignored.

That is not to say that there are no anomalies. It’s just that the mind has a way of ignoring what it doesn’t understand … ignoring the unknown until it is impossible to deny its existence. The proverbial “elephant in the room” that may be obvious to most people, but is invisible to anyone whose view of the universe has not yet discovered a rational explanation for elephants.

New Wheels

I bought a new set of wheels this weekend … something more fuel efficient, of course.

You see, I’vebeen riding the same old Team Fuji bicycle since I bought in new back in 1986, and by now, it’s accumulated more than its fair share of road grime, rust, bearings that pop inside the crank, and various squeeks and rattles that don’t go away for more than a few miles afer a good session with a can of silicone spray. As soon as I get a chance, it will go to a neighborhood charity that refurbishes old bikes, and some young man will get himself a chance to dream of being in the Tour de France.

My new wheels are mounted to a Bianchi Volpe, a sturdy road bike made for touring. If my memory serves me properly, volpe means fox, so when I’m cruising along the road, I’ll imagine a long tail flowing in the wind (maybe my ponytail will do). In the next couple of years, I hope to find my way to retirement, then I’ll give that bike a workout like it never imagined. I’ll ship it to the Pacific Coast, then see if it will last longer than my legs do on the trip to the Atlantic. It’s got the gears to climb every mountain west of the Mississippi (and east), as well as a speed gear to accelerate when I have the prairie winds at my back.

If this one lasts as long as the last one, I’ll be looking for another new set of wheels for my 84th birthday. Meanwhile, I’ve got many a mile to go before evening. I’m just stopping by some woods on a Spring evening, then I’ll mount up and see how good the daily commute to the office (25 miles round trip) feels on the new Fox. Meanwhile, I’ll let the car gather a bit more rust and dust.

Getting Burned – The Blue Light Special

I’m working from home today, in part because nobody would want to see me in my current condition. My face is bright red in spotchy patches. I cannot touch my skin, it burns so badly, and I have to be heliophobic for the next 48 hours — in other words, I have to stay out of the sun. The reason — I had photodynamic therapy (PTD) on my face yesterday.

That is the cost of growing up in a sunny climate (Colorado) with a fair complexion. After awhile, you get so many actinic keratoses (not sure if that is the right plural, but they are the pre-cancerous skin cells that the dermatologist likes to freeze off when they are few and far between) that only a more generalized treatement will work. What’s it like?

First, your skin has to be thoroughly cleansed. The clinic I went to (Straub, in Honolulu) used an acetone wipe. Then your face gets wetted down with a substance known by the trade name of Levulan, or aminolevulinic acid (ALA). Precancerous cells grow more quickly than normal cells, and they are thirsty for the amino acid that gives ALA part of its name. That will shortly lead to the downfall of the AK cells, who in this case suffer from gluttony. The first part of the PTD process takes five minutes at the most, then you get sent away for an hour and a half of “marinating.” The ALA has to soak in, and meanwhile, you have to stay out of the sun. Fortunately, it was just coming up to lunch time, so between lunch and a good book (Earth: The Sequel), 1.5 hours was easy to kill.

The remaining ALA is rinsed off the face, then comes a pair of yellow swim goggles and a space helmet — a U-shaped wrap-around blue-spectrum sunlamp. I had a small fan that blew in my face, and a spray bottle full of water that I could use to keep myself cool, and the radio running in the background to keep my mind off the sharp pinpricks that started erupting all over my face. For 16 minutes and 40 seconds (exactly), I sat in this contraption listing to Don Maclean sing about American Pie. And meanwhile, my face was turning into a mince-meat pie.

When the egg timer goes off, the blue-light special is done, and so am I — well done. I leave with instructions to avoid sunlight for 48 hours, use sunscreen for four months, and itching and peeling over the next several days. The first two days of that feel like a bad sunburn … can’t touch my face, can’t pucker, can hardly open my mouth wide enough to slide a bite of food past my teeth. But I must say, it’s better than the alternative.

I’ve had all sorts of people say, “You’re a naturopath, why don’t you use a natural cure? I heard about some kind of tar you put on a precancerous spot …” and so forth. Well, maybe there is some tar that works naturally. But I would have been tarred and feathered from the top of my bald head to the bottom of my chin, and then some, in order to cover all the spots. That’s the thing about natural remedies … the best ones are those that are preventative. Once something starts up, you have to weigh the alternatives. There is a ledger that balances between effectiveness and expediency, between an ideal lifestyle and the need to carry on with daily life. In this particular case, the dermatologist’s therapy came out on the positive side of the ledger, even if my face does look like hamburger for a couple of days.

Peak performance?

I hate to be a spoilsport, but striving for Peak Performance is, for most people, just setting yourself up for failure. You may be able to get there (to your own definition of peak) for a few minutes (or even seconds) by psyching yourself up, but it is not sustainable for most people. The simple reason:  it is too much of a stretch.

You see, it’s a simple matter of “You can’t get there from here.” An even more appropriate saying is “A thousand mile journey begins with a single step.” You cannot, under ordinary circumstances, go directly from where you are straight to your destination. All you can do realistically is to keep your destination in mind, and take a first step in that direction. Eventually, you may get to the precise destination you envisioned, but more likely, you will get caught up in the journey, and realize after awhile that your priorities have changed, and the target has moved. Refocus, and take another step in the direction of whatever goal is most important to you.

There are no prescriptions for achieving peak performance in any aspect of one’s life. The reason — every individual is different. I wake up naturally at 5:30 am. I check my e-mail, eat breakfast, then head to work. If it’s raining or I’m tired, I’ll usually catch the bus. If I can, I bicycle the 12.5 miles to the office. When I absolutely have to, I take the car, but I always feel a bit of disappointment in myself for not having been self-sufficient, and for having made a small contribution to the congestion and over-consumption that I see on the roads every day. That is just me. I have my own motives, my own pattern of living, my own way getting through the day.

I seriously doubt that you have the same pattern of living. Maybe you don’t work. Maybe you work two jobs. Maybe you skip breakfast, take kids to school, walk to work or drive 40 miles each way along winding country roads. Maybe you have bacon and eggs for breakfast at 9:00 am, rather than having a bowl of natural cereal at 6:00 am. The details are what make you you, and me me. It does no good for Doctor Don to tell you to walk for 20 minutes a day if you spend your life in a wheelchair, or if you live in a neighborhood where you fear for your life every time you step outside the door. I can’t tell you that you should eat 1800 calories when your personal physician tells you that you need a 3000 calorie diet just to maintain your current weight.

For me, the journey towards “peak potential” means riding my bike to work one more day a week than I do right now. For you, it might mean setting your alarm 15 minutes earlier so you aren’t so rushed in the morning, or promising yourself that you will walk to the mailbox at the bottom of your driveway instead of making the journey in your car. Each person is an individual, and the first step on your thousand mile journey has to start right where you are at this moment. It cannot follow a prescription, unless it is the prescription that you give to yourself.