Awake! Sleep Struggles & Parkinson’s
Published: June 27, 2024

By K. Strachan

“I want to sleep but my brain won’t stop talking to itself.” — Anonymous

“I’m an insomniac, my mind works the night shift.” ― Pete Wentz, Gray

It’s 2:34 AM! I am up… obviously. I am composing this in the middle of what should be my sleep cycle. But I am not asleep… yet again. I am at the point in the night where I have given up on trying to get anything resembling a proper night’s rest. If I am honest with myself, this has been an ongoing and significant issue in my life since my mid-30s. As an aside and interesting note, my Neurologist believes my Parkinson’s may have started around this time.

Looking at my efforts to track my sleep, which I have been religiously collecting since my formal Parkinson’s diagnosis in 2020, it’s clear I have a lot of trouble with sleep. On average, I get a few hours a night. Maybe! My current goal for a realistic amount of sleep each night is five hours and I seldom, if ever, achieve this.

This is not to say I don’t have longer sleeps. My current pattern is a handful of sleepless nights followed by what I call a “crash” sleep. Essentially, I pass out and sleep the night and sometimes the next day away. My biggest issue is “brain fog” for days at a time. Not ideal. Not pleasant. Not good enough! Even with these crashes in place, I’m still only averaging a modicum of sleep each night.

It should be noted that most adults require 7-9 hours of sleep per night.

“Legend says that when you can’t sleep, it’s because you’re awake in someone’s dream. So, if everyone could stop dreaming about me, that would be great.” — Anonymous

What are theimpacts of such a deficit? Tragically, they’re nefarious.

“The cumulative effects of sleep loss and sleep disorders have been associated with a wide range of deleterious health consequences including an increased risk of hypertension, diabetes, obesity, depression, heart attack, and stroke. Sleep deficiencies are also linked to a higher chance of injury in adults, teens, and children.” [National Library of Medicine]

Sleep deprivation leaves the brain vulnerable to oxidative stress, which has been tied to the development of Parkinson’s disease [Sleep Foundation]. The National Institutes of Health (NIH) indicates that sleeping 5 hours or less increased mortality risk, from all causes, by roughly 15 percent! Studies graphically illustrate that progressively shorter (or longer) sleep duration is associated with a greater chance of mortality. While it is uncommon for people to die directly from a lack of sleep, chronic sleep deprivation can contribute to a range of health problems that may become life-threatening. Sleep deprivation also increases the risk of serious car crashes, falls, and workplace accidents due to the associated cognitive impairments.

So, death is one possible result for those with prolonged issues with sleep time and sleep cycles! Hmmm… awesome – NOT!

There are other, less bleak but still significant, issues plaguing sleep deprived individuals:

 – Reduced alertness and slow reaction times
– Trouble paying attention
– Reduced cognitive ability and impaired logical reasoning

– Mood changes, including irritability

– Anxiety
– Depression
– Reduced libido

– Poor judgment
– Brief daytime sleep periods, called micro-sleeps

– Unplanned naps
– Reduced quality of life
– Reduced social activity due to tiredness

A quick jaunt over to, I discovered that my Insomnia Severity Index (A widely recognized screening tool to evaluate insomnia) is very high. I am in the red zone, meaning severe clinical insomnia. This has been confirmed by both my Neurologist and Pain Doctor.

What’s to be done? What can mitigate this spiral down? In a nutshell… address sleep hygiene and investigate Cognitive Behavioural Therapy. 

The National Institute of Health (NIH) provides this definition:

Sleep hygiene is defined as a set of behavioural and environmental recommendations intended to promote healthy sleep, and was originally developed for use in the treatment of mild to moderate insomnia.

Suggestions for adjusting one’s sleep hygiene are as follows:
– Go to sleep and wake up at the same time every day. Decide on a realistic sleep schedule. It’s not likely one will be able to go from 3 hours a night to a full and proper night’s sleep of 7-9 hours in one go.

–  Follow a calming bedtime routine every night in the hour or two before bed. Read, meditate, breathing control practice for example.

–  Avoid using digital devices before bed and during any nighttime awakenings. Turning off electronics like TVs, cellphones, laptops, and tablets 30-60 minutes before bed.

–  Only take daytime naps that are shorter than 30 minutes

–  Engage in exercise every day for at least 20 minutes. The more one exercises during the day the better, with the caveat that exercise should be avoided close to bedtime.

–  Keep the bedroom dark, cool, and quiet

–  Choose a mattress, bedding, and pillows you find comfortable

–  Avoid caffeine, alcohol, and nicotine in the evening

–  Avoiding heavy meals close to bedtime

–  Get some sun to balance your body’s internal wake-sleep clock (called circadian rhythm)

Sadly, sleep hygiene alone will not cure sleep problems, so seeking the advice from a member of one’s health care team concerning one’s sleep issues will be a critical step.

In consultations with my team, it was decided to try a short run of sleep medication. The purpose of the medication was to assist in actually falling asleep within the sleep schedule that was collaboratively set. A cautionary note on sleep medications… many are highly addictive. This means one’s body becomes dependant on the medications to achieve sleep. It is sometimes challenging to ween off the medications provided.

My ten-day medication run allowed me to experience sleep with my set sleep schedule, essentially helping train my body to fall asleep within this time period. This short run medical intervention also allowed me to ween off the sleeping pills faster and not become overly dependent on them. Did this work? Not in my case. The medication route was a bust.

However, I have had some success with improving my sleep hygiene – specifically calming routines before sleep. While these have not always improved the time I find myself able to sleep, the calming and relaxing sessions have provided some quality downtime.

Sleep hygiene doesn’t address root causes of insomnia like ongoing pain, depression, or anxiety. “Sleep hygiene gives you a framework to change some habits, but it may not focus on these core things,” says Annie Miller, a behavioural sleep medicine therapist at DC Metro Sleep and Psychotherapy.

What I am trying next? Cognitive behavioural therapy (CBT).

Experts use cognitive behavioural therapy as a standard treatment for chronic insomnia. CBT is a program that includes sleep hygiene and also helps you spot and replace harmful behaviours that get in the way of quality sleep.

CBT methods include:

Sleep restriction. I am doing this currently. Instead of lying in bed tossing and turning, you’ll get out of bed when you can’t drift off. This technique helps break the cycle of staying in bed during a bout of wakefulness, which can lead to even worse sleep. The idea behind it is you’ll become somewhat sleep-deprived and more worn out the next time you go to bed.

Sleep diary. For 1 to 4 weeks, keep a diary to track your habits in and out of bed, like how much caffeine and alcohol you consume, bedtime routine, naps, and how much sleep you’re getting at night. “I can see how much time they’re spending in bed because that’s what we want to reduce,” Miller says. “We’re trying to set it up for them to be in bed, be asleep, and that’s it.” Many smart watches and wearables do a lot of the grunt work data collection and may be worth the outlay of cash.

Stimulus control therapy. With insomnia, your brain fights sleep. Stimulus control therapy trains your mind to think of going to bed as a cue for sleep rather than wakefulness. To do this, you’ll set up and stick to a regular schedule for waking to set your circadian rhythm. You’ll go to bed only when you’re truly sleepy, and if you can’t fall asleep, you’ll get out of bed for a while and only go back when you’re sleepy again. You’ll also avoid taking long naps late in the day so you’re sleepy when it’s time to turn in.

Relaxation training. Techniques like meditation, breathing routines, imagery, and muscle relaxation help soothe your body and mind.

Passive wakefulness. Learn to worry less about going to sleep and to stop “trying” to do it, which will help you relax and fall asleep more easily.

Biofeedback. Biofeedback involves tracking your heart rate, muscle tension, and other functions that impact sleep so that you can learn to control them so that you can relax and sleep. You can do this on your own or with a home biofeedback device.

Light therapy Sleep and light have a powerful connection. Light therapy aims to treat disorders by exposing one to light that mimics sunlight. Sit in front of a specially designed light therapy box that gives off light like the sun. A session may last 20 to 40 minutes.

In trying to address my sleep issues, I have done myriad interventions (many listed above). I still have some options to explore.

Regular Doctor’s exams could lead to new lifestyle recommendations or treatments for other overlooked conditions. If you don’t have habits or health conditions that explain the problem, you might get a new prescription. For example, your doctor may prescribe a medicine that’s usually for another condition, such as epilepsy or depression, but also happens to help with sleep.

I could also get a referral to a sleep psychologist/clinic, who could help me explore how negative thinking and behaviour – that you may not even notice – could be keeping you awake at night. Relatively few people know about talk therapy for sleep, but it can also be very effective. The purpose of talk therapy is to help identify issues causing emotional distress.

You may also look into alternative therapies for insomnia. For example, researchers are testing electroacupuncture for people who don’t get help from sleeping pills.

All is not lost… Insomnia can be addressed and one’s sleep can be improved. It may just take time and careful exploration.

The U-Turn Parkinson’s Community Blog is written by individuals living with Parkinson’s, Care Partners, friends and family members of someone with Parkinson’s, Professionals with experience of Parkinson’s and others. If you’re interested in submitting a piece to be included in our blog, you can learn more here.