Inspiring you to live well with Parkinson's disease
Well here I am, 3:40 AM, up and out of the warmth of my bed – yet again. It’s been years of sleep issues of every sort. Sometimes it’s initial insomnia where I’ve spent countless hours staring into the darkness, reading into every shadow, tossing and turning, trying to find a comfortable position, trying not to wake my husband, trying not to look at the clock which seems to mock my difficulty. Other nights I do fall asleep, either because I haven’t truly slept in literally days or because I’ve given in and actually taken yet another pill, this one designed to make me sleep for a few precious hours. I don’t often do this, mostly due to my own stubbornness, the desire to will my body to do what it’s supposed to do without the need for something outside of me to do the job. This obstinate stand usually frustrates my husband and my oldest daughter whose plea “Mama, what’s one more pill especially if it helps?” makes complete logical sense. Yet to me that one little pill (or the three it takes now) represents yet another way this disease has taken away my ability to control my body, to have it do what is should, naturally. Yet another frustrating issue to deal with.
If it’s not difficulty falling asleep, it’s waking up far too early or waking up frequently for a variety of reasons; pain, restlessness, anxiety or like tonight, vivid dreams. And for some reason, the vivid dreams are usually disturbing - like losing your child in an amusement park or being chased by some unknown crazed menace - those kinds of anxiety-provoking dreams. Some nights I put up with it, repeating the sleep-dream-wake cycle over and over again until the alarm rings or some nights, like tonight, I get fed up of waking with my heart pounding, disoriented and anxious. So I slip out of bed and into the darkness and peacefulness of the house.
It’s been years of this mess and in some ways my body has gotten used to functioning on a minimal amount of sleep, sometimes only two to three hours a night for days. I am able to plod through daily activities and responsibilities on what I think is a fairly high functioning level – I hope! But those are also the days when my symptoms are a challenge, when I have to down more medications to control my tremors, when the dyskinesias rear their ugly head, when the muscle spasms provide a constant source of pain.
Yet once again, my obstinate nature eliminates any chance of slowing down. Napping is not really an option, not with the project timelines I have or running a house and a family that includes three beautiful, young daughters. Would everything fall apart if I lost just one hour to a power nap? Probably not…of course not. I understand that from a logical perspective but emotionally I feel as though I’m giving in, that I’m losing precious time to an uncertain future.
I envy the much healthier approach of my wiser counterparts who are kinder to their bodies and truly understand the old adage “If you don’t take care of yourself, then you can’t take care of anyone else.” In fact I think in the long run their quality of life is undoubtedly better. On the other hand not sleeping has its advantages. My closets are impeccably organized, my emails all replied, much of my to do list conquered. However there have also been countless hours wasted on facebook, searching the web and my one guilty pleasure, reality TV. I’m being facetious of course. Except for the opportunity to enjoy the quietness of the night which is in stark contrast to the craziness of the day, there really is no advantage.
Mine is not a unique struggle and it really is an important one to address. What little dopamine stores that we do have, are replenished when we sleep and without the appropriate rest, all our symptoms can worsen, not to mention our mood. I know, I live it and I can testify to the fact that on the days I do actually get a full night’s sleep, my symptoms are much better. I take less medication and I feel less apathy both physical and mental. I am better off and so are those around me!
Sleep disturbance is in fact, a very common symptom for those with Parkinson’s Disease. Close to 80% of us have some sort of issue, be it difficulty falling asleep, waking up frequently, restless legs or the more serious REM behavior disorder where some will act out their dreams and move violently at times potentially causing injury to their bed partner (unintentionally of course).
So what can you do? Well there are lifestyle modifications you can make that may help. These suggestions or what we call sleep hygiene include:
Apart from these guidelines, sometimes it is necessary to make changes in your medication routine as some of the drugs that we take can cause or worsen sleep issues. In fact dopaminergic drugs can either improve or disrupt sleep depending on the person. Then at times, as in my case, medications need to be added that specifically help you sleep.
As you can guess, knowledge doesn’t always lead to action. I’ve incorporated many of the sleep hygiene suggestions into my nighttime routine. The satin sheets are on order. That brings me back to where I started. Those pills that promise sleep and often deliver (although not as satisfying as how I vaguely remember feeling after a good night’s sleep on my own) are sitting on the counter in front of me. I have to come to the logical conclusion that I need to sleep in order to optimize living well with this disease. My daughter’s words and the frustration on her face really do ring true - pretty good advice. Maybe I need to start looking at things from her perspective, but the light of day is starting at the horizon…I guess the battle between logic and emotion will have to wait till after the hectic pace of yet another crazy day…sweet dreams!