Do you remember when you first experienced sleep disruption?
The first time I experienced sleep disturbances, I didn’t know that I had had a disturbance until the following morning. My wife told me that I woke her up in the middle of the night with yelling, punching, and kicking. Luckily she wasn’t hurt, but she did suffer that day due to lack of sleep. I already had a snoring problem, so she wore earplugs, but after that night, she also put a pillow between us just in case I flailed my arms in her direction.
Tell us what your experience of sleep disruption has been like?
For me, my sleep disturbance varies in intensity. There are certain things that make it worse, like drinking caffeine or alcohol, so I try to avoid both. At best, I don’t experience any sleep disturbance, but at worse, I remember a really vivid dream I was having during the disturbance. Vivid dreaming could be a side effect of PD or from medication, but either way, I definitely remember the dreams when it gets bad. Usually, my dream involves me fighting some evil force, and I’m trying to protect my family.
How does the symptom impact your life?
Sleep disturbances impact my life in that they can be exhausting, for both me and my wife. I wake up extremely tired, and she does as well. She is usually able to function during that day, albeit at a lower level, but if I wake up exhausted, I usually find myself napping during the day, battling headaches, and feeling generally tired.
How has the symptom impacted your personal and professional life?
Personally, sleep disturbances leave me exhausted and give me bad mornings. Typically, mornings don’t agree with me to begin with, but after a night of vivid dreaming and punching or yelling at night, it leaves me even more tired, often needing to cancel my morning activities and meetings. Sleep disturbances are the main reason why I usually take mornings off. Professionally, these disturbances take away productive hours from my day. I use my day for teaching online, writing, and volunteering. With fewer hours available, the first thing to go is my writing, which is the most flexible of my professional activities. However, I still need to hit certain deadlines, so I need to make up my productive hours at night when I should be going to sleep.
Have Covid-19 lockdowns impacted your experience of the symptom?
Covid-19 has made me more on edge in general, and the anxiety has definitely translated into more disturbances at night. Apart from weight gain, which I’m sure many can relate with, the increase of anxiety has led to more and increasingly severe disturbances. My wife has put a pillow between us to help keep me and my wild movements on my side of the bed. Usually, if it happens early on in the evening, that could mean more are ahead in the night, so I excuse myself to the guest bedroom and sleep there to allow my wife some needed rest!
Do you have any tips on managing the symptom?
Regarding tips for managing sleep disturbances, I recommend avoiding caffeine, alcohol, and situations that trigger your anxiety, since these seem to be connected to this aspect of Parkinson’s. I also recommend a sleep agent like Melatonin. Many people do well on small doses like 1, 5, or 10 milligrams. If this doesn’t work, your neurologist can discuss other options like clonazepam, which is what I take. The drug comes with its own side effects, so be aware of this. However, this strong medication and others like it are worth taking a look at as a way to reduce the severity of these symptoms.
Do you think people should be more aware of sleep disruption as a Parkinson’s symptom?
I think sleep disturbances with PD should receive more focus, since many people with Parkinson’s experience them, especially as the disease progresses. I think talking more about the non-motor symptoms of Parkinson’s would be useful for the public to better understand the disease. Many think it’s just the shakes after 6o years of age, but there is so much more to it! Parkinson’s affects every aspect of your life, and sleep is just one more thing that is misunderstood, and to which there is attached an unnecessary stigma. Sleep disturbances belong to the category of mental health, and the more patients, caregivers, and loved ones understand these symptoms, the more we normalize them and the more the patient is able to see this as a normal symptom of Parkinson’s, the more help they will get.
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Nick Pernisco is the Parkinson’s Warrior, a person with Parkinson’s who has dedicated his life to helping others with Parkinson’s. Get the Parkinson’s Warrior book here. Join the discussion on Facebook.