Parkinson’s ‘Illegitimate’ Children – Part III

I’m continuing my series on Parkinson’s lessor-known (or what I call illegitimate children) symptoms. So what will we be discussing today? Something that is probably familiar with most Parkies out there – including myself, yet isn’t discussed as much as it should be, and that is… SLEEP ISSUES!

It turns out that sleep issues – insomnia, sleep fragmentation, sleep behavior disorders, and the like – are very common but under-reported in PD patients. This is one of those topics with which I can completely relate to (unfortunately). I have had sleep issues for the last 10+ years – and researchers now believe that having sleep problems may even foretell the beginning of Parkinson’s in a individual! Ugh, talk about unwanted beginnings…

But before we discuss the specific sleep issues that may come with Parkinson’s, we have to understand what sleep is and how the brain functions during sleep. So back to school, folks!

Sleep Primer 101

What is Sleep?

If someone asked you exactly what sleep is, do you think you could give them a good answer? Hmm… maybe, but I bet a lot of us would stumble around trying figure out how we would describe it. So (because you KNOW that I love definitions!) here is the dictionary definition of sleep:

“A condition of body and mind such as that which typically recurs for several hours every night, in which the nervous system is relatively inactive, the eyes closed, the postural muscles relaxed, and consciousness practically suspended.“

Uh huh… well, a little ‘wordy‘ but I guess that does describe what sleep is. One interesting fact is that we, on average, spend approximately one-third of our lives sleeping! Yowzers! Think of all that extra time we could be doing other things if we didn’t have to sleep!

What’s the purpose of sleep?

But we know we need sleep – it is essential for energy restoration, immunity, learning, and growth/development. This is especially true for us Parkinson’s patients, as it is believed (by recent studies) that the brain clears waste products from itself during sleep. Too little sleep means we don’t get all that ‘crap‘ out of our brains each night!

The stages of Sleep

You may think that your brain is asleep when you are sleeping – but no, it is not! Your brain is very active during sleep. There are various ‘stages‘ that your brain/body goes through when sleeping. Let’s review those quickly:

First is Stage 1 (referred to as N1). This stage of sleep is the beginning of going to sleep – the transition between being awake and asleep. You are drowsy yet aware of things going on around you and you can be easily awakened from this stage.
Next is Stage 2 (N2). Your heart rate and breathing slow down, and most importantly your body’s core temperature drops. Along with this your muscle activity decreases – you are now ready for the next stage!
Stage 3 (N3). This is the ‘Deep Sleep‘ stage, where your brain and body get the most benefits of sleep. During this time your heart rate, breathing, and core body temperature are at their lowest. Also, the body repairs itself, regrows tissues, builds bone and muscles, and strengthens your immune system during this phase.

Finally, there is REM sleep, or Rapid Eye Movement. This is when you dream – your eyes move rapidly, and heart/breathing rate increase. Also, for most folks, your body is ‘paralyzed‘ (called Sleep Atonia) during this time, so that you don’t ‘act out‘ your dream (which I am sure your spouse/partner is happy about!) It is also believed that this is the time when the brain is processing all of your memories from the day, figuring out what memories get ‘deleted‘, and what memories get moved from ‘short-term‘ storage to ‘long-term‘ storage. So the next time you have that dream of being naked while riding a Pogo stick through the stadium in the middle of a football game, it’s really just your brain figuring out what to do with your daily memories!

Your ‘Body Clock’

Your body and brain follow certain ‘rhythms‘ during each 24-hour period – called circadian rhythms. Mostly associated with light and darkness in our environment, this is the reason why we get ‘sleepy‘ when it starts getting dark, and more awake when it gets light. The amount of light entering our eyes triggers the release of melatonin from our brain’s pineal gland – it releases more melatonin toward the end of the day, preparing our bodies for sleep. This melatonin level remains high for most of the night, then drops in the early morning when the sun is about to rise, causing us to wake up.

How Much Sleep Do We Need?

This is a very open-ended question, because it really depends on the individual. Our sleep needs changes as we get older, and are affected by health issues (such as Parkinson’s). But in general, it is believed that adults should have around 7-8 hours of sleep each night. Boy, if only we in today’s society could get that much sleep! Getting too little sleep results in what they call a ‘sleep deficit’ – if we don’t ‘repay’ this deficit, we can suffer the effects such as daytime sleepiness, cognitive issues, impaired reaction time, and the like. We’ll discuss more about this in regard to Parkinson’s – i.e. Sleep ‘Quality’ vs. ‘Hours Slept’.

 Sleep Disorders with Parkinson’s
Now that you are an ‘expert‘ on sleep itself <grin>, we can discuss those particular issues regarding sleep that we Parkies can experience.
 
 
Insomnia
Insomnia is a somewhat funny sounding word, is it not? Yet what it refers to is not funny at all… Insomnia is the inability to sleep – not only difficulty falling asleep but staying asleep. It’s usually divided into two areas: Sleep Onset Insomnia, where a person has difficulty simply getting to and staying asleep; and Sleep Maintenance Insomnia (also known as Sleep Fragmentation), where the individual can get to sleep fairly quickly but has difficulty staying asleep, and in particular, waking too early and struggling to get back to sleep. Did you know that up to 80% of Parkinson’s patients experience some kind of insomnia? That’s a lot of us; yet this type of sleep disorder isn’t reported as well as it should be and is undiagnosed in a lot of cases. Not only that, but it turns out that sleep maintenance insomnia is the one most experienced by us Parkies.
 
 
So what causes insomnia? There are a boatload of non-PD reasons why you might get insomnia (anxiety, depression, worry, etc.) but let’s instead concentrate on the reasons why we Parkies can get insomnia:
Meds – Believe it or not, some of the drugs we take to treat our motor symptoms can themselves cause insomnia! This is particularly true of dopaminergic drugs like MAO-B inhibitors and amantadine – these drugs have alerting properties and can make insomnia even worse.
PD Motor Symptoms – Things such as rigidity and tremor can return during the night and affect your sleep. Trust me, it’s hard to get to sleep and stay asleep if your muscles are rigid or you get excessive tremors while in bed!
Anxiety/Depression – These mood disorders can lead to difficulties falling asleep. If you are worrying all night about something (like what you need to get your wife the next morning because you forgot her birthday!!) it’s almost impossible for your mind to settle down enough to sleep.
RLS/Sleep Apnea – Restless Leg Syndrome (RLS) and Sleep Apnea (disordered breathing) can cause anyone to have problems with sleeping; then adding Parkinson’s into this mix makes it even more difficult to get to and stay asleep.
Progression of Disease – It’s sad to say that as our disease progresses the chances of us having sleep issues increases – this is simply the result of disease getting worse over time.
 
As you can see, there can be many reasons why we Parkies experience insomnia, so treatment for each of us may be different and depend largely on what is causing it.  Meds can be changed and/or timed different (for example, taking amantadine earlier in the day so that it is out of your system by bedtime); Practicing better sleep ‘hygiene‘ (like minimizing daytime naps, increasing exercise, making sure your bedroom is dark and cool, minimizing use of electronic devices right before bedtime, etc.); Cognitive Behavioral Therapy (CBT) can help change patterns of negative thinking regarding sleep and the behavior that results from those negative thoughts; a somewhat newer approach is the use of Light Therapy, where the individual is exposed to bright light in 30-60 minute blocks of time during the day (Not exactly sure how light therapy works, but it may help reset and regulate our ‘body clock’); and finally, the use of sleep inducing meds (such as Melatonin or Trazodone) can be used to help the individual get and stay asleep – but really these should be used as a last resort since they can cause even more disturbing side effects!
 
Also, a lot of us worry about not getting enough sleep when we should also consider sleep quality. Is it any better to get 10 hours of sleep for instance, yet 1/2 of that time we are tossing and turning? I think not – we have to also consider the quality of the sleep we are getting. In addition, some folks may be able to get by with only 5 hours of sleep IF that sleep is mostly spent in deep or REM sleep. It really depends on the individual – some can get by with less, some with more. For me, I always would prefer to get quality sleep, as I think my brain benefits from that more than being able to sleep in till 10am each day! So just don’t consider your time but also your quality of sleep.
First and foremost, though – talk to your doctor and/or neurologist as they have dealt with this issue in their patients before and can tailor the proper treatment for you!
 
REM Sleep Behavior Disorder (RBD)
Wow, now that’s a mouthful – luckily we have the abbreviation RBD instead of trying to say this every time! Anyway, RBD (also known as ‘parasomnias‘) is a condition that involves abnormal/unusual movements, behaviors and emotions that can occur when one is falling asleep, during sleep, or waking from sleep. In layman’s terms, it’s mostly concerned with folks ‘acting out their dreams‘. As mentioned above, when one falls asleep the brain normally keeps the body ‘paralyzed‘ so that even during a nightmare we don’t act out that dream physically. However, as PD advances, this paralyzing effect can brake down, which results in some PD patients acting out their dreams on a physical basis. This can result in not only injury to our spouses/partners and maybe even the PD patient themselves, but can also leave those affected feeling depressed and guilty of causing harm to our loved ones!
 
I did some research and there hasn’t really been a lot of studies done on this and therefore not a lot of treatment options. Obviously, preventing significant injury is the first line of treatment – so it’s important to take safety measures to avoid accidents in the bedroom. This may include those involved sleeping in different beds or other sleeping arrangements; or implementing some type of ‘bar‘ or separation device between sleep partners. There are a few drugs that may help with this, such as Clonazepam and/or Melatonin – but there can be side effects with these so make sure you get approval from your neurologist before taking any of these! In any case, if this is occurring then we most defiantly need to contact our neurologist and discuss this with them. If you are using the ‘team‘ approach to your Parkinson’s care then most likely you also have a physiologist or psychiatrist on your team, and they can be a great source of help. Don’t be afraid to bring this 
forward to them – they are there to help!
 
Excessive Daytime Sleepiness (EDS)
EDS basically means you are so sleepy during the day that it affects your day-to-day living. I’m not going to go into much detail about EDS, except that up to 50% of PD patients experience this.
 
Treatments can involve limiting caffeine, improving sleep hygiene, light therapy, and minimizing drugs that may aggravate this condition (such as dopamine agonists). And sometimes EDS itself is a direct result of having insomnia and not getting enough sleep. Again, your neurologist and/or team can help, so if you experience this issue bring it up and discuss it at your next visit!

My Experiences with Sleep Disorders
As I mentioned at the beginning, I have had insomnia issues for the last 10+ years. My first time with insomnia was the sleep onset type – there were nights when I know I never slept at all; and then knowing I had to get up at 6am to go to work just made the insomnia worse! My doctors and I, at the time, thought that this was related to some anxiety and worry on my part, and at the time things like SSRI’s helped. However, that has changed since I have been diagnosed with Parkinson’s – I am now sure that the cause of my past and current insomnia is most likely due to PD itself. I really do believe that the insomnia I experienced back those many years ago was the beginning of my Parkinson’s – and research is showing that this could be true! (I might dedicate a future blog entry about this very subject)
 
So I have a lot of experience with these sleep issues; in fact, this is one of the reasons why I have done so much research on sleep – remember, I’m the type of individual (otherwise known as an egghead!) who completely researches a topic that affects me so that I can gain a better insight into what it is and how to manage it. I wouldn’t call myself an ‘expert‘ on sleep by far, but it’s been something I have been investigating for many years. In any case, I have firsthand experience on how aggravating and debilitating these sleep issues can be. Not only on the physical side, but on the mental side as well. (Boy could I tell you a couple of stories on that! But I digress…) I’ve experienced most of these issues; including full-on insomnia (where I spent many a night with virtually NO sleep!); EDS, where during my last year of working I would fall asleep at my desk almost every day; and now I am having the lovely issue of falling asleep quickly but waking up early in the morning and not being able to go back to sleep! I’ve luckily not experienced too much of the sleep behavior disorder – although there have been a few times where I have acted out a dream – luckily with no damage to my wife (!); but I know this may mean that RBD could be in my future at some point (Oh joy!)  So I know what anyone out there experiencing sleep issues feels like; and I, like you, am still trying to find a way to manage my sleep better – and I’ve tried a lot of things so far.  Things that worked before my PD diagnosis simply don’t work as well now if at all.
 
Regardless, my advice would be to discuss any sleep issues one has with their doctors – don’t keep it ‘hidden‘ or you won’t have any chance at all for making things better! They have the experience and knowledge to help you overcome these problems.  And rely on your care partner – remember they can be a great source of support and help!
 
Well, I think that is enough on the sleep subject. Hopefully I have helped all of you out there to know a little bit more about sleep; and encouraged you to not keep this ‘illegitimate child‘ of Parkinson’s hidden but rather bring it forward and discuss it – only then can we hope to get treatment for these disorders, and finally (hopefully) start getting a good nights sleep!
I only have a couple of other blog posts left to do on this series; but I have a few other interesting topics I’d like to pursue first so I may write a few of those before finishing this series. But before even that I am going to make a few changes to how I write and maybe even the website itself; I think I will talk about in my next post. I’ve been thinking about these changes for awhile, and I believe they will enhance not only the website but also my blog writing. So stay tuned, loyal readers – as Arnie said, “I’ll be back!“

Sharing thoughts on my journey with Parkinson's