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The Parkinsonism Symptom We Are Too Tired to Talk About

Parkinsonism has many symptoms that just aren’t talked about much. They range from the “big C” (constipation), heavy sweating like a sinner in church and lack of smell (which sometimes is a beautiful gift depending on what the smell is). Yes, you can have these symptoms and you may not even have a tremor — that is the one physical symptom that most people identify Parkinsonism with. This disease is considered a “snowflake” disease and like a snowflake, no two are the same. However, there is one symptom that seems to be consistent, persistent, belligerent, unwavering and unsympathetic to anyone suffering from Parkinsonism: that evil villain is insomnia. This insomnia is different from a night or two having trouble sleeping; this insomnia is a beast.

What is insomnia? Most people have had bouts with it. It is where you couldn’t sleep because you were afraid you might lose your job and you tossed and turned for a few days. Or it is that forced insomnia from the gift of having a child — broken sleep for nights on end, but you have a beautiful life in your arms and you know there is a light at the end of the sleep-deprived tunnel.  Well for people with Parkinsonism, it is like having had a newborn because you wake up throughout the night, except there isn’t a cute cherub face to great you — only your own tired face with dark, swollen eyes because you haven’t slept more than three straight hours in a single night for months… or even years.

This type of insomnia is on steroids.  You could try sleep aids, but they often do not go well with this disease. I remember taking a sleep aid once, and I was literally having hallucinations from it. I was also having sleep paralysis (a frightening state where you are awake but you cannot move and see terrifying images), and stayed up the entire night fearful to fall asleep. Sleep aids are definitely out of the question for me. Then I tried melatonin. This only enhanced my already vivid dreams and allowed me to fall asleep, but it didn’t help me stay asleep.

It isn’t just about the quality of sleep; it is also about quantity. I may fall asleep for three hours, but then I am up at 3:30 a.m. counting sheep — one sheep, two sheep, 20 sheep, 333 sheep, 1,111 sheep — by then, the sheep have all fallen asleep and I am now staring at a clock that says 6:30 a.m. My day starts, and I know there is a chance I will fall asleep mid-sentence later on. The daytime somnolence is a dangerous by-product of this chronic insomnia.

Many of us with Parkinsonism talk about how we fall asleep during the day at the most inopportune time — like mid-conversation with a family member, or in the first row of a play when the actors are looking right at you, or even scarier: while driving! That has only happened to me once, but that was one time too many. Sleep is so important to our overall well-being. It is a basic need, like food and water. When you have chronic sleep problems, it places you at risk for other illnesses, like cardiovascular disease, diabetes, obesity and depression. It is hard enough to manage the constellation of symptoms of Parkinsonism without adding on other diseases.

To all of you with Parkinsonism, I feel your pain, and you are not alone. So many people do not realize how sleep eludes us and how lack of sleep can lead to other problems on top of our chronic illness. To those of you who are just learning about this, please do not take it personally if we aren’t fully there when you speak to us. Our distraction is not personal, it is just life as a pseudo-vampire minus the sharp teeth and the ability to sparkle in the light of day like the Twilight characters.

My best advice is to try and manage this with a sleep routine. This would include taking your medications at the same time each day. Do not watch television or look at any electronics for at least 30 minutes before bedtime (if you do, where eyewear for filtering out blue light). Do not watch television in bed, since your bed should be associated with two things: sleep, and the other I will not mention since this article is rated G. Do not eat anything an hour before bedtime, and do not exercise after 3 p.m. if possible. Drink some warm chamomile tea and avoid alcohol, nicotine and caffeine one hour before bed. If you wake up and can’t fall back asleep after 15 minutes, get up and read a book until you are sleepy. Or, reach out to me on Facebook — I am sure I will be awake and I will try and bore you back to sleep with dull conversation about quantum physics (OK, maybe not). You can always read the pamphlets off of your medication bottles — the package inserts should put you right back to sleep.

If all else fails, rise and shine and know many of your fellow Parkies are up before the roosters with you.

Getty image via Elvetica.