By Elizabeth Grover
Nearly a year ago I wrote an article that appeared on this blog on the topic of sleep and PD. The basics are still true – the fact that sleep is essential to reset your system, that eight hours is the recommended amount of sleep for all adults, and that disturbances in healthy sleep patterns are one of the most common non-motor symptoms of Parkinson’s disease. The most common such disturbances are REM behavior disorder, insomnia, sleep fragmentation, excessive daytime sleepiness, sleep apnea, trouble staying asleep, vivid dreams, fatigue and restless leg syndrome. Sleep problems can even occur early in the disease, even before diagnosis. People with Parkinson’s experience different sleep patterns than most people; their deepest sleep periods are shorter and interrupted more often than usual. These are exacerbated by medications wearing off, causing the return of stiffness and difficulty moving. Sometimes we just feel too uncomfortable to sleep!
So in that blog post, I recommended trying some sleep hygiene strategies – avoiding blue light (i.e., screens), darkening the room, reducing noise, cooling your room, going to bed and getting up at the same time every day, limiting daytime naps, avoiding caffeine and alcohol, exercising daily, getting some sunshine if you can to help set your circadian rhythm. choosing a sleeping position that is a compromise between spinal integrity and comfort, practicing meditation or relaxation exercises, or taking hot bath or shower.
The reality was, however, that I had tried most of these and none seemed to help. I was still waking at 3am or 4am about 60% to 70% of the time and not being able to get back to sleep. At my check-up with my movement disorder specialist (Dr. Cara Jacob who – fortunately for me – just returned from a sabbatical), I presented sleep as my most bothersome symptom. Dr. Jacob suggested two possible treatments. One was that although melatonin had given me GI problems, she suggested trying it again in the ultra-low dose specifically intended to help one fall back asleep in the middle of the night. The other suggestion was to try taking a Sinemet in the middle of the night. Perhaps it would help my body to relax and avoid that rigidity or muscle tension that is a hallmark of PD and that might be keeping me awake.
Well, I tried both of these approaches, and I am now only losing sleep in the middle of the night less than 10% of the time. A huge improvement! What have I learned from this experience? I have learned what I try to tell others, but perhaps did not realize how true it was for me – that PD is a very complex disease and that everyone is different and needs a different approach at a different time during their disease duration. I have also learned once again how vital it is to share all of your information with your doctor. And how lucky we are to have such great doctors in our area. Thank you, Dr. Jacob.