when i posted my first thread way back in the mgh days, it was about post encephalitic parkinsonism. i have always battled my diagnosis, thinking that if i deny it enough it would not be real. i have been told i have had everything from msa to epilepsy, to anxiety disorder, to last stage pd, to non progressive parkinsonism, to post encephalitic pd to conversion disorder. (my most recent dxd as of today).

i dunno what to think any more. so, manybe instead of thinking, i will just live my life with whatever is going on and accept something one of my bazillion neuros once told me. "You have survived something very few people have." (herpes simplex shingles, menangitis, encephalitis all at once at age 15, then menangitis a few years later)."Be glad you are alive", the neuro went on to say. "we may never find out what exactly is going on with you as there is no test case for you.you are the test case. all we can do is treat your symptoms"

it has been nearly 26 years now since my original post encephalitic dxd. i will be 52 years old this year. putting it all together and doing the math, it means i have been living with the dxd half for half of my life. i honestly cannot remember when i wasnt dealing with something physical. for 10 years after my dxd i had no idea what pd even was.no computer and very little info for young onset 26 years ago. so, i struggled with whatever my body was doing on my own and in many ways, i think i did better.

then i discovered the internet. the first place i found was mgh. i became a regular there and found myself becoming immersed in "pd support". i got substantial information and found a family and though i touted "I have pd, pd does not have me.", through my addiction to the forum, i was rebuffing my own words. pd (or whatever it is) was taking over as i focused so much on it and not on life.

then came chatrooms. then i started parkiejam. my rebelliousness took over and i became "harley" and lived up to the name. it was not just a pd support site any more. it became my identity. "harley" or "78harley" or "harley7898367", queen b of the chatroom. ("b" meaning "*****"), as i was later informed. i would spend days staring at my puter screen creating thiings for pd support. i would stir up smoke from embers left dying, i tried to take care of biz, but i am not a politician and so alot of what i said was too blunt for others to take. believe me, i was misunderstood alot. but, such is the way with the internet. it is too easy of a playground to jump to conclusions. there is an occasion that happened even in this site where a situation happened that was very difficult on both myself and the other party involved. but, it was way too public and never should have been.

parkiejam is gone and harley goes away with it. ****, i dont even have my bike any more. i am still writing and if you are interested you can read my stuff at

http://thewritingforum.net/html/laur...an_page_1.html

i am quitting all memberships at the pd sites, including this one. it is time for me to live life. not "live llife with pd".. just live life in general. i am going to go find Laura Jeanne and trade in my boots for her tennis shoes.
thanks for the memories.
laura