Sleep

 

I spent 65 of the last 189 days in bed with my smart phone. No, I am not into phone sex! So why have I dedicated 34% of my time during the last six months to being in bed? Not only was I in bed all those days, I was asleep for most of the time. I know this thanks to an app on my iPhone. And my sleep was mostly restful and accomplished without sleeping pills. Ah, technology. But my phone is not my only sleep secret. I have learned that environment, activity, emotional state, age, food, schedule, and one or two other factors, including the weather, must be just right.

Many Parkinson’s patients report interrupted sleep.  Obvious reasons are: restless legs, leg cramps, dystonia, and frequent felt need for urination. I experience these as well as pain due to old injuries not directly due to PD, but, in some cases, related to falls I have taken. Poor sleep is not isolated to Parkinson’s patients; some poor souls complain of poor sleep or insomnia throughout their lives.

Can anything be done to solve this problem or reduce poor sleep?  I asked myself this shortly after my diagnoses in 2005. Like most people, I experienced many bouts of poor sleep during my life time, but something had changed. I did not know it, but I was beginning to experience PD related poor sleep.

Stress as a Reason for Poor Sleep

I knew from my own experience and talking to others that one of the primary reasons for poor sleep was that people worry about something or someone in their life. Financial wellbeing is a constant worry to many people and one I have dealt with over the course of my 45 years in the investment business. The old rule was to “…reduce the portfolio risk down to the sleeping point.” Sleep deprivation comes from worry about loved ones, bad relationships, big mortgages and potential job loss. Perhaps the ultimate sleep deprivation comes when one is grieving the loss of a child, parent, sibling or spouse.  I believe that when sleepless nights are due to the stresses of life some amount of sleep deprivation is inevitable until the problems are resolved.

Improving Sleep Through Measurement

I concluded that the best approach to my sleep analysis was to keep track of things that I could control separate from those things that I could not. My list started out small, but over time I added and subtracted. Eventually, I considered the following things that I thought mattered and that I could control: did I take an afternoon nap; drink caffeinated drinks after 2pm; eat dinner after 8pm; drink wine with dinner; exercise during the day; exercise after 6pm? For things, I could not necessarily control I added: did I have allergies; did I have a cold; was I sick in some other way; was I experiencing physical pain; was I experiencing emotional pain; was I worried about something or someone in my life; did I travel; was I traveling tomorrow; did I have a stressful day; did I anticipate a stressful day tomorrow?

My idea was simplicity itself.  I created a spreadsheet with the above reasons down the side in the first column; all the columns to the right were dates. If one of the items was true, I placed an “x” in the date. This part of the issue was reasonably objective.

The problem was, and is, how to measure my sleep. Over the years, I experimented with various methods. My first attempt was to assign to that night’s sleep a “+” if I thought I slept better than the previous night, a “- “if I slept worse, and a “0” if I could not tell the difference. While this was clearly subjective, it was very useful in isolating factors that led to poor sleep.  Technology has come to the rescue, and later I will share specifics about the smart phone app that does all this and more with pretty good objectivity.

The important conclusion here is to recognize that there are variables you can control that will increase the probability of a good night’s rest. At the same time, being aware of those factors that are out of your control, and inhibit a good night’s rest, encourages you to find solutions and reduces your frustrations.

The Bedroom Environment

Once I had my measurement system set up, I started thinking about my sleep environment. This led me to what irritated me most about hotels and how poorly I frequently slept when I traveled. By comparing the two environments, I improved both my sleep at home and when I traveled.

The bedroom environment is where I started. The first requirement is that it be relative free of outside sound. Insulated windows and thick walls protect from noisy neighbors, street noise, and in the case of hotels and apartment buildings, elevators where people stand and talk at all hours of the day and night. One complication for Parkinson’s patients, and anyone that desires a hotel room designed for the disabled, is often these rooms are “convenient” to the hotel elevator. I have found that when attending conferences, the tendency for hotel guests to congregate at the elevator and chat for a long time can be maddening at 1am.

The second requirement for the bedroom environment is to have blackout curtains. No sunlight, moonlight or street lights at all, nada. This is an absolute requirement to ensure that your body’s melatonin does not get interrupted.

The third requirement is to be able to control the room’s temperature. This is extremely important for good sleep. For me, and I am sure this varies from person to person, the ideal sleeping temperature is between 62 and 65 degrees Fahrenheit.

Fourth, and again this is a personal thing, I enjoy having a ceiling fan in my bedroom. I have found that a cool room with air movement helps me to get and stay asleep.

Finally, some folks like to listen to music, stories or even a sound machine that helps distract their minds from the current day’s or next day’s events. I have even found that the noise of an air conditioner lulls me to sleep. My current preference is for piano or cello music.

I recognize all the above is the ideal and impossible to accomplish immediately, but good goals.

The Bed

There is no question that the bed itself is of critical importance to most people. It is no less true today than in the day of Goldilocks. In The Story of Goldilocks and the Three Bears, Goldilocks was very tired after roaming about the house of the three bears so she went upstairs to the bedroom. She laid on the first bed, but it was too hard. Then she tried the second bed, but it was too soft. At last, she tested the third bed, and it was just right. Goldilocks fell asleep.

http://www.indiana.edu/~slavicgf/e103/class/2011_02_09/goldilocks.html

The size of the bed, the firmness of the mattress and the size, shape and firmness of the pillows play a role in the quality of sleep. What the mattress and pillows are stuffed with add to the dilemma if the sleeper is allergic to feathers.

These issues matter for most people. But in addition, for PD patients, the slipperiness of the bed sheets can be critical. As the disease progresses, PD patients find the simplest thing, like rolling over from one side to another a struggle. If the sheets are too slippery it is easy to slide out of bed; not slippery enough and one feels like you are stuck in a glue trap. I have found silk sheets to be marvelously slippery; with a silk fitted bottom sheet, I am able to move around in bed quite easily. Although, I must be careful when I sit on the edge of the bed or I slide off.  With a silk top sheet, the layers of blankets slip off the bed.  I solved this by replacing the top silk sheet with a cotton sheet. Silk sheets are expensive and, I recommend them for the bottom sheet only. I have found satin-like sheets to be just fine.

Covers or blankets are also very important.  The analogy I like to give is hiking in the mountains. Early in the morning the valley is cool so you start out with a little more clothing. As the day progress, the sun rises, and you are farther up the mountain, you have worked up a sweat. Time to remove some of the clothing. Experienced hikers learn to dress in layers because the weather changes, and their body temperature fluctuates based on their exercise and their circadian rhythm.

When you sleep, the room temperature may change, or oscillate depending on the air conditioner, furnace or even the weather. But what does happen is that your body temperature naturally falls one or two degrees below the normal of 98.6F around 5am in the morning.

For a discussion of sleep and body temperature see: https://www.ncbi.nlm.nih.gov/pubmed/9322266/

By dressing the bed in layers of thin blankets you can adjust your covers to suit the situation. The absolute worst thing for me is a hotel that provides only one layer of covers, as in a duvet.

Napping and Daytime Sleepiness

As my Parkinson’s has progressed I found myself sleepy after lunch. At first, I thought this was due to aging. This view was enhanced when I found many of my non-PD friends occasionally enjoyed a mid-afternoon siesta, especially on the weekends. Unfortunately, daytime sleepiness is very common among PD patients, especially as the disease progresses. My solution has been to take a nap only if I feel like it; I do not have a set routine. I have tried to stick with the NASA research findings and either keep nap duration short at about 20-40 minutes or much longer; there are plenty of times when I need a full one hour or more. https://www.nasa.gov/vision/space/livinginspace/03jun_naps.html

Also see Power Naps: https://en.wikipedia.org/wiki/Power_nap

My experience is consistent with most studies: I find short naps refreshing and longer naps producing grogginess and causing poor sleep that night. My advice is to keep records of your daytime nap duration and examine the correlation with (a) how refreshed you feel and, (b) the effect the nap duration had on that night’s sleep. If you feel like a nap, take a nap.

Scheduling Sleep

Schedule sleep? Why not sleep when you are tired and be awake when you are not? Young people tend to stay up late and sleep in late. Most old people go to be early and get up early. This tendency appears to have two interesting aspects. First, it has been discovered that:

“Hormones that circulate in the blood could explain why older people have different sleep patterns than younger people, a new study suggests.

The body’s circadian clock is determined by the expression of the circadian genes in the body’s cells, and the time for sleeping and waking are indicated by peaks in expression of these genes, the study said. Older people tend to have an earlier peak expression over a 24-hour period than younger people, which explains why they tend to go to bed earlier and wake up earlier.”

https://www.livescience.com/13666-older-people-sleep-wake-early.html

Second, the existence of this hormone may beg the question; why are young people and old people different? It has been suggested that evolution may provide the answer.

“A sound night’s sleep grows more elusive as people get older. But what some call insomnia may actually be an age-old survival mechanism, researchers report.

A study of modern hunter-gatherers in Tanzania finds that, for people who live in groups, differences in sleep is commonly associated with age help ensure that at least one person is awake at all times.

The research suggests that mismatched sleep schedules and restless nights may be an evolutionary leftover from a time many, many years ago, when a lion lurking in the shadows might try to eat you at 2 a.m.

The idea that there’s a benefit to living with grandparents has been around for a while, but this study extends that idea to vigilance during nighttime sleep said study co-author David Samson, who was a postdoctoral fellow at Duke University at the time of the study.’

https://phys.org/news/2017-07-live-in-grandparents-human-ancestors-safer.html

If you are a believer in the hormone theory, then as you age you will naturally desire to go to bed earlier and rise earlier. Don’t fight it. Nature is talking through a hormone that permits survival of our ancestors by always having groups of people awake even at night.

My conclusion from this is that as I age I should not fight the desire to go to sleep early. I should build it into my life. I schedule sleep.  I arrange my mornings, evenings, entertainment and travel around my sleep schedule. This gives me more consistent restful sleep and more productive days.

Sleeping Medications

The taking of various sleeping medications is not restricted to Parkinson’s patients searching for a good night’s rest. I will, in this discussion stick with the rules I set down when I started this blog. I only discuss medications or supplements I take and why. I am not a medical doctor and have not had any medical training.

Here is what I take every night about 30 minutes before I turn off the light.

1. One 50mg tablet of Benadryl
2. One 3mg tablet of melatonin

I have been taking these two pills since the early 1980’s which preceded my Parkinson’s diagnoses by over twenty years. I now swallow at bedtime, other prescription and non-prescription medicine unrelated to sleep or Parkinson’s disease. The Benadryl, I began in the spring and fall when I was stricken with allergies. I quit it during the daytime when I found it made me sleepy. When I had sleep problems, it was a short jump to using Benadryl as sleep medication. It makes me sleepy quickly, and I feel it within 30 minutes. At the dose, I normally take it wears off in about four hours.

Melatonin, first came to my attention in the early 1980’s as a partial solution to jet lag. I found, after considerable experimentation, it was very useful. In a future blog, I will discuss medications and travel, but, here, my use of melatonin is for a sleep aid at home. It is much slower reacting than Benadryl and longer lasting. At my dose, it usually carries me into the early morning.

These are the only sleep related medications I take; I do vary the doses when I travel depending on how many time zones I pass through. I never take sleeping pills or narcotics of any kind. I wish to minimize the drugs effecting my brain and nervous system. This means that when I am suffering emotional pain or troubled in some way, I do not sleep very well.

Smart Phone Apps

I currently own an iPhone 7 so the discussion will focus on my use of the apps related to sleep are those for the IOS platform. As far as I have been able to tell the same apps are available for the android platform.

The app I am currently using is called “Sleep Cycle alarm clock” by Northcube AB. At the time of this writing the app has a solid 5-star rating and 688 reviews. The developer’s website can be found at:  www.sleepcycle.com

The app is best known as an alarm clock that analyzes your sleep and wakes you up naturally during your lightest sleep phase instead of a jarring sound bringing you out of deep sleep. I like this feature, but I do not use it because I wish to take my PD medicine at precise times.

What I like about this app is that it measures sleep either through your movement with the accelerometer or the microphone and provides the user with a quantifiable measure of sleep quality. Second, it measures your activity during the day by counting your steps. Third, it measures the air pressure, the moon phase, the weather and relates these variables and others to your sleep quality. It even listens to see if you snore and tells you how many minutes you snored and provides you with several 15 second sound samples. Another built in feature is it measures your sleep quality by physical location where you spent the night and compares it to where you sleep the most, which is typically home. I have found the location data particularly interesting in analyzing sleep during travel. When you wake up in the morning, it asks you to decide right then how you feel by clicking on one of three faces: happy, neutral or sad. This is like my old method of plus, zero or minus when I tried to compare my sleep with the previous day. It then allows you to calculate your heart rate right within the app; this result is graphed.

If these features are not powerful enough, it also allows you to make notes of things in your life and then measures them against your sleep quality. For example, here are just a few of the variables I provide to the app and every night I check (yes or no) if it applies for today or tomorrow.

1.  Did my PD meds work ok during the day?
2.  Did I experience any freezing incidents during the day?
3.  Did I fall today?
4.  Do I have a cold, allergies, etc.
5.  Did I take a mid-day nap?
6.  Constipated?
7.  Soft voice?
8.  Yoga?
9.  Massage?
10.  Worked out?
11.  Physical Therapy?
12.  Drink coffee or tea after 2pm?
13.  Did I eat dinner?
14.  Did I eat dinner after 8pm?
15.  Did I have wine with dinner?
16.  Travel day today?
17.  Travel day tomorrow?
18.  Are there sad personal matters?
19.  Stressful day today?
20.  Stressful day tomorrow?
21.  Low blood pressure today?
22.  Did I experience unintentional movement?

The app organizes all these features, and many more into graphs and charts by the day, week, month and in trends for the entire data series. If you are not happy with their analysis you can export the entire data file as a CSV file and perform your own analysis in Microsoft Excel. Great care must be taken in the interpretation of the results from multiple regression forecasting models since many of the individual variables are related to each other; in statistics, this is referred to “multicollinearity.”

Why do I find this app useful? I have found the simple tabulation of the days I fall, the days I have freezing incidents, etc. correlated with my sleep patterns, the weather and how I take my Parkinson’s medicine has steadily enabled me to, if not sleep better, at least improve my understanding why I did not. I admit to being a data hog, but sleep is, in my view, so critical to good health and wellbeing it is worth it.

Summary

Restful sleep is worthy goal for people, the young and the old, the sick and the healthy. I can speak to having once been young, now being older, once being much healthier and now being sick. My observation is that there are many diseases much worse than Parkinson’s Disease. Sleep difficulties exist in many of these diseases and I will not pretend to know if the solutions that work for me will help in such cases, but my solutions are simple and noninvasive.

I believe the solution for a good night’s rest starts with the acceptance that you must separate the problem into those things you can control from those that you cannot. You have a large measure of control over what and when you eat and drink. If you exercise, if you don’t, when you exercise, and how you exercise. You can, with time and money, control the bedroom environment consisting of light, noise and temperature. The firmness of the bed, the pillows and the slipperiness of the sheets are all within your decision-making power. Layers of thin blankets will aid in adjusting to your changing body temperature and as the room temperature varies. Scheduling your sleep as part of your life has many benefits and seems to have a basis in our biology.

What you cannot control is also a valuable concept. If you are lying awake worrying about a loved one, sleep will not come easily short of prescription sleeping pills. Emotional stress resulting from personal problems is your signal that you must act or permit yourself to grieve. Sometimes you can resolve the problem, and sometimes, you can’t.  Upon occasion, I have awakened in the morning with the solution, and feel rested, even though I thought I did not sleep a wink. A good night’s sleep is a wondrous thing; try it. I believe sleep is the best medicine and that without it the body, mind, spirit and soul cannot heal.