Today has been a rather difficult day. I was just fine leaving my place for my neurology appointment. I was about three miles away from the doc's office and my sinemet started peaking and dyskinesias ensued. To make a long story short, I ended up calling the neuro on my cell phone and cancelling my appointment. I have been able to continue driving by keeping the promise of "not driving" when it is not safe to do so. My next appointment is April 5th. This will be after the Spring Rally.

I have been really ticked off about all day. This anger has been the result of reading an article about PD. In this article the people in the health profession made the comment that "Dyskinesia is not painful." I am finding myself outraged today over the assumptions that medical professionals continue to make that are simply untrue. I try very hard not to think I am an expert or a "Know-it-all" But darnit I do have experience with PD. This experience is of an UP CLOSE AND PERSONAL type of knowledge.

Get this; WebMD quoted "Dyskinesia is not painful, but it is very distressing." HELLLLLOOOOOO!!!!! Distress in my encarta dictionary has the definition of distress as being "pain and suffering of the mind and body". Do they think I or anyone does not see the absurdity to their statement. When the parkinsonian's body starts the transition of going from being "off" to dyskinetic it is literally like a rollercoaster ride. The body goes through intense anxiety, heavy sweating, along with rapid heartbeats. Imagine Tina Turner years ago when she did Proud Mary. The song starts extremely slow. By the end of the song...well you understand what picture I am trying to paint. I have always been able to move like that. It is just that with the dyskinesia the parkinsonian does not have a choice or control of when or where these writhing body movements will begin or end.

ADVOCATE, MAKE AWARE, TEACH, DO NOT BE ASHAMED, SCREAM FROM THE TOP OF YOUR LUNGS!!!!!

Parkinson's disease and everything that it pertains to is very agonizing.

Thank God for the Spirit that lives within me......Thank God that Pd cannot rob me of peace, love, friendship, contentment, and a long eternal life.

Much hope and love, Sandy