Pre dawn ramblings

OK, it's 4am and I've checked outside to see if the predicted snow, yes more snow, has started, and it has not. I've checked my email and also the company website for HR information that I've been meaning to look up. Now what? Should I go back to bed? Eat breakfast? What is it that keeps us awake and blogging at 4am while the rest of the world sleeps? Don't think I just woke up either, I've been awake since the first look at the clock at 12:38am. I know I'm not alone, there are unknown numbers of people with PD who have sleep problems. It's well documented but the cause is still speculation - is it the medications or the disease process itself? The last neurologist that I visited handed me a 2 page document listing non pharmacological remedies for dealing with sleep issues. She had copies ready and waiting on her desk so clearly this was a complaint she was used to hearing from her patients. I'm so tired that I just realized that this is an almost exact replica of an earlier posting. I'll stop my rambling, on the topic of sleep anyway.

I recently read a list of "myths and misconceptions" about PD which I thought was really affirming and helpful. The first was that 'looking good does not always equate with feeling good'. How many times have you had the experience of running into someone that you haven't seen in a while and the first words out of their mouth are "you look great!", now I agree that it's nice to hear that someone thinks you look good, but there's an underlying sentiment that accompanies that statement that makes me a little uncomfortable. Is it the suspicion that people, upon hearing that you have PD expect you to look just downright awful and instead they are pleasantly surprised not to see you leaning on a cane or shuffling? What am I supposed to look like? Does looking good mean that you are feeling good? Absolutely not, no relationship necessary. I have days when I can barely walk and the pain in my arm is at its most intense, and still I'll have someone tell me that I "look good". OK, thank you but I feel like crap! Number one myth - "feeling good does not always equate with looking good".

Myth number two - "PD affects only movement". This one is so off base as to make me wonder why anyone in the medical community could still believe it, but they do. PD affects almost every system in your body and symptoms such as poor digestion, constipation, pain, lack of smell, sleep problems, fatigue, depression, anxiety, dizziness, etc are not uncommon. But, not everything is related to PD, another myth to keep in mind.

Don't forget to register for the annual Parkinson's Action Network (PAN) Research & Public Policy Forum, coming up Wednesday, February 17th. This year's forum is being web cast live. Check your local community for a group showing of the program, or click here for more information.