“It’s very important that we re-learn the art of resting and relaxing. Not only does it help prevent the onset of many illnesses that develop through chronic tension and worrying; it allows us to clear our minds, focus, and find creative solutions to problems.” Thich Nhat Hanh
Part 1, Sleep and Parkinson’s: Although it’s a movement disorder, many living with Parkinson’s say that sleep disorders and fatigue are some of the most troublesome aspects of the disorder. I totally agree with the lack of sleep as a real issue in Parkinson’s. For a comprehensive series of articles about Parkinson’s and sleep, go here: http://www.theparkinsonhub.com/your-quality-of-life/sleeping.html
Initially, I thought my sleeping problem was a 3-pronged issue with Parkinson’s itself, Ropinirole (Dopamine Agonist), and anxiety. During the last 16 months I am no longer anxious about my Parkinson’s, which leads me to believe it’s related to Parkinson’s/Ropinirole. As described by the Parkinson’s Disease Foundation (http://www.pdf.org/en/sleep_disturbance ): “Most people with Parkinson’s find it difficult to sleep through the night. Rigid muscles, tremors or stiffness at night, or not being able to roll over in bed can all interfere with sleep, as can the frequent urge to urinate. In addition, many people with Parkinson’s experience vivid dreams or hallucinations and act out their dreams, violent nightmares, a problem called REM sleep behavior disorder.”
Alterations in our “biological clock” (also called circadian rhythm) have been found in Parkinson’s, which would contribute to sleep disturbances. Their results included: (i) those with Parkinson’s had lower melatonin levels compared to healthy controls; (ii) those with Parkinson’s who also had daytime sleepiness showed lower melatonin levels than the typical person with Parkinson’s; and (iii) sleep quality of those with Parkinson’s, with or without daytime sleepiness, was comparable. The authors of this study suggest trying bright-light therapy and melatonin (but please consult with your Neurologist). To read the paper, go here: Videnovic A. and others (2014) Circadian Melatonin Rhythm and Excessive Daytime Sleepiness in Parkinson Disease. JAMA Neurol. DOI: 10.1001/jamaneurol.2013.6239 http://dx.doi.org/10.1001/jamaneurol.2013.6239
My sleep disturbance is a subset of the features described above, no problem falling asleep but I can be totally awake 3 hrs into my sleep cycle. Currently, besides melatonin nightly, I am working hard to try to normalize my late night activities (e.g., NOT falling asleep on my couch watching TV) to get a better night’s sleep. Dealing with sleep issues is definitely work in progress for me. There is far too much information about the importance of sleep for healthy individuals; however, it is a crucial daily-life aspect for those of us with Parkinson’s.
“With the new day comes new strength and new thoughts.” Eleanor Roosevelt
Part 2, Relaxation and Parkinson’s: One of the more difficult aspects of living with Parkinson’s is dealing with stress. Any form of stress can make your symptoms (for instance, stiffness, gait issues or tremor) worse. The past school year I dealt with this stress from teaching in a couple of ways.
A typical Tues/Thurs for me last fall semester was teaching medical students from 8:00-1150 AM, then teaching undergraduates from 12:30-1:45 PM, and typically meetings from 3:30-5:00/4:00-5:30 PM. What worked best for me was a short (~15 min) lunch break sitting outside with the lab group technician (thanks Samantha!) and just relaxing. At other times, I relaxed by practicing mindfulness (meditation) while outside sitting on a bench. Doing either of these daily events allowed me to successfully perform my teaching duties; however, in the absence of a ‘short pause’, my symptoms trickled-in and could mildly interfere with my afternoon teaching/meeting schedule.
To better handle the overall work-related stress, two additional events for me are huge stress-breakers and contribute to my relaxation: hitting a bucket of golf balls at the driving range, and going for a long walk across campus. Each event lasts about an hour and I immediately feel the tension melt away; they are most invigorating. The final usual relaxing activity that I incorporate into my day is to stretch for ~2 minutes every 2 hours or so; this gives me instant benefits.
Research has shown that Parkinson’s tremor is diminished with relaxation guided imagery (http://www.ncbi.nlm.nih.gov/pubmed/19768725 ). The National Parkinson Foundation has a worksheet on “Learning to Relax and Reduce Stress” (http://www.parkinson.org/NationalParkinsonFoundation/files/b7/b7d5bfa9-a4c6-4182-be4e-51b0c4055283.pdf ). And TheParkinsonHub has a handout dealing with “Parkinson’s and Breathing” (http://www.theparkinsonhub.com/your-quality-of-life/article/parkinsons-breathing.html ).
Whatever you do to relax, do it frequently. And while some people might think we’re lazy or ignoring work because we’re relaxing, in reality it provides vitality to successfully complete our daily tasks. Find a series of daily relaxing-stress-relieving activities, and do them as often as necessary. Remember that relaxation renews you to stay focused on work duties/life issues while you are managing your Parkinson’s.
“Almost everyone who reaches a plateau where he or she is happy and comfortable says it’s because of finding balance between work, relaxation, exercise, socializing and family – plus some alone time to do something contemplative, creative, or educational.” Neil Strauss
Part 3, Traveling with Parkinson’s: The problems of Parkinson’s should not prevent you from traveling, as long as you prepare well for the trip. Traveling today can present issues to anyone; however, a trip for business or pleasure should be an enjoyable experience and not avoided because of our disorder. There are numerous full-length overviews on how to successfully travel with Parkinson’s, go here: http://www.pdf.org/en/traveling_pd and http://www.parkinson.org/NationalParkinsonFoundation/files/1d/1d7f60c5-5c9d-4393-bf00-ab88c268959c.pdf and https://www.michaeljfox.org/foundation/news-detail.php?tips-on-traveling-with-parkinson-disease and https://www.parkinsons.org.uk/sites/default/files/publications/download/english/fs28_internationaltravelandparkinsons.pdf
During the month of June, I attended 3 meetings; one by driving (Chapel Hill, NC to Richmond, VA) and two by air (San Diego, CA and Toronto, Canada). Here are a few things/issues to consider (most you already know, but here’s my viewpoint):
•bring documentation about your Parkinson’s [Physicians, emergency contact info; I wear a MyID medical alert bracelet with this information imbedded in it (http://www.endevr.com/medical-id-alert-bracelet/myid )];
•carry your medications with you while traveling (always wise to bring a couple of extra days), not worth the risk if your luggage gets misplaced;
•have access to a list and schedule of your medications (mine is on a note in my iPhone and MyID);
•carefully gauge the weather where you are going (CA and Canada were both much cooler then NC and I love the heat);
•driving was more fun/relaxing then flying (remember that most Parkinson’s drugs cause drowsiness, please be careful if driving);
•wear comfortable clothes and shoes (being out-of-town at these meetings was more stressful then work in-town, and having comfortable clothes and shoes on made it less stressful);
•be cognizant of the pace of each day because for me a meeting in a convention center/hotel complex was very different/more demanding then everyday life (the time zone change from NC to CA affected my energy levels for a day);
•make sure you eat on a regular basis, sleep adequately and enjoy your surroundings (getting away is usually a good thing);
•don’t overestimate your abilities, pace yourself carefully all-day (traveling to the Canada meeting while still jet-lagged from CA trip took its toil on me for several days);
•as someone with Parkinson’s, you have the right to request early boarding to get a few extra minutes to board and get comfortable;
•only a few airlines allow you to check luggage for free, but check your bags any way because being hands free will make traveling easier and safer for you (but don’t forget to keep your medications in your carry-on);
•stay hydrated and stay warm during air travel;
•my list above should be reinforced/cross-checked with the websites mentioned above;
•travel for work or pleasure is definitely possible for those of us with Parkinson’s, it could even be therapeutic;
•plan/pack appropriately, relax, have fun, have great fun, and bon voyage!
“Traveling tends to magnify all human emotions.” Peter Hoeg
Part 4, Sleep, relaxation, and traveling with Parkinson’s: The topics discussed here are all needed to thrive while living with Parkinson’s. Getting adequate amounts of sleep is important for all, but essential to maintaining the health of someone with Parkinson’s. Of course, the quality of sleep is compromised is many of us with Parkinson’s. A key part of our maintenance plan is relaxation, since it unites the morning-afternoon-evening. Without daily relaxation, our symptoms are magnified and our lives suffer from within. Travel is possible with Parkinson’s; make sure to integrate your usual sleep and relaxation programs during your trip. By implementing a thoughtful travel plan to accommodate your needs with Parkinson’s, you will be able to travel for work or pleasure and continue to live a full life.
The Road Goes Ever On’ in The Hobbit and The Lord of the Rings. J.R.R. Tolkien
Roads go ever ever on,
Over rock and under tree,
By caves where never sun has shone,
By streams that never find the sea;
Over snow by winter sown,
And through the merry flowers of June,
Over grass and over stone,
And under mountains in the moon.
Roads go ever ever on
Under cloud and under star,
Yet feet that wandering have gone
Turn at last to home afar.
Eyes that fire and sword have seen
And horror in the halls of stone
Look at last on meadows green
And trees and hills they long have known.