Ever had one of those mornings when you wake up and look around, but you’re not sure where you are or how you got there? It used to happen regularly to me when I was a child sleeping overnight at my grandmother’s house.
But one time was different. I woke up in my own bed, but didn’t know how I got there. I distinctly remember falling asleep in the guest room. Maybe I was confused, still in that waking up brain fog. I walked to the guest room. There was my favorite pillow. I don’t sleep without it. Confirmation!
Yes, my body was hijacked, and I had no memory of it. That was a big shock.
Sleep disturbances affect about 88% of people with a Parkinson’s diagnosis. Those like me who show evidence of damage to the other dopamine-producing area in the brain, the insular cortex, are most likely to have such problems. Sleep problems are also considered one of the early signs of the disease.
For years, I have experienced physical movements while dreaming. I would move my foot and leg in bed, as if I were “stepping up.” Perhaps mindful thoughts during the day that focused my movements to avoid stumbling now manifest as dreams. The brain likes to dream about things we dedicate attention to. This new full-body hijack was vastly different, but likely an exaggeration of the “stepping up” nocturnal motor movement. So far (knock on wood), it has only happened once.
The other issue is that my wake-sleep biochemical clock is malfunctioning. Late at night, when it is pitch black outside, my body acts as if it is the middle of the day. At midnight, I am filled with energy and ready to tackle life.
Circadian rhythm imbalances are also known to be associated with Parkinson’s patients like me who have insular cortex damage. Learning what this feels like, how it feels different than other body-brain sleep problems, and then putting in place strategies that improve sleep took several years.
On top of these organic brain problems is the ever-present muscle pain that increases in severity during sleep. There is night paralysis that the brain uses to make sure we don’t act out our dreams. This adds to the rigidity my muscles experience. I wake every three hours to stretch or meditate before I drift off back to sleep. It took several years to build this routine into a habitual sleep ritual.
A sleep ritual is a sequence of actions I follow throughout the day and into the early evening to help me fall asleep and stay asleep. These include:
1. Every morning, I purposefully expose my eyes to sunlight. I don’t stare at the sun, I just sit in a room filled with sunlight. This helps to set the biological clock.
2. I strive for 30 minutes of light exercise during the day.
3. TV, computer, and blue-screen viewing stops between 8 and 9 p.m. Blue light from video screens has been shown to interfere with sleep.
4. No alcohol, nicotine, caffeine, or high-sugar foods are allowed after 7 p.m. They all interfere with sleep.
5. I do two hours of brain-relaxing activity, such as reading or listening to music. I stop the emotional thinking.
6. I’ll have a hot shower to relax my muscles.
7. Breath work focused on circadian rhythm addresses the feeling of wanting to wake up. This breath work takes about 30 minutes to do. With relaxing music, I utilize meditation and the conductor to quiet the mind and relax into sleep. Sometimes it doesn’t work, especially if I’ve missed one of the preceding six steps. And then I experience insomnia.
8. When I awake during the night, I sit up and take several deep breaths to quiet the pain and to get physically oriented. This is followed by a few minutes of stretching. I am extremely mindful of my body to achieve the goal of returning to restful sleep. I try not to think about other things. If I start to think about other life events, which often happens, I refocus on breath and relaxation. Most of the time, I only need to do this twice a night. However, sometimes there are bad nights that lead to insomnia.
I am not an expert on sleep problems. If you have serious sleep problems, consult your medical provider. My goal is to gain some control over my sleep problems without using sleep medication. Putting a chemical into my brain that forces it to shut down — and doing that every night — is not an option for me.
Sure, it took me a long time to develop this sleep ritual. But I feel better with a good night’s sleep.
What sleep strategies would you like to share? Please do so in the comments below.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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