Tulip designed by Karen Painter

Thursday, June 3, 2010

I'm awake again..or still

I listened to a webcast yesterday, the topic was fatigue and sleep disorders related to Parkinson's Disease. And, here I am awake at 12:30 am in a hotel room, traveling on business. I need to be alert for a meeting tomorrow, fortunately it's not early so maybe I'll be able to sleep later than usual. the webcast was interesting and emphasized the non-motor symptoms of PD and the fact that they, more than the motor symptoms which define the disease, can be the real culprits responsible for day to day misery and low quality of life. I recently visited the neurologist and my primary complaints were fatigue and sleep disturbance. She focused on my sleep problems, which in truth only bother me about 2 or 3 times a week, the rest of the nights I sleep ok. I realized that I can be incredibly fatigued regardless of the amount of sleep I got the previous night, whereas if I did have a bad night's sleep I am invariably fatigued the next day as well. So, fatigue can occur alone whereas poor sleep always results in fatigue, a double whammy. I am still resistant to taking sleeping pills, though she continues to try to talk me into it, I will take melatonin which sometimes (rarely) works. i do all the other things I should do, exercise, no coffee after noon, not too much napping, etc.

I'm tired of that topic (no pun intended). On to more joyful topics. Our wedding was wonderful: lots of good family and friend interactions. Family came from all over: my parents, sister and brother in law from Arizona; uncle and aunt from Colorado; more aunts and uncles from Baltimore; cousin from Boston; nephew-son from St Thomas; son from New York; and daughter from the universe, currently she is living in Puerto Rico. And, friends, both old and new ones came to celebrate. It was wonderful and I was exhausted for the entire week following the wedding. happily exhausted, but nonetheless devoid of any energy. I try to pace myself and plan but find it very hard to do, my energy level is so unpredictable and I don't like holding back when I'm feeling good just to "conserve" my energy. Sometimes I conserve with no discernible results. If I'm feeling good I'd just as soon do as much as I can when I can.

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