[harley]

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

[reverett123]

May you find peace. -Rick

[dbiker2]

Good Luck Laura!!!

[pegleg]

After many years of communicating vicariously with you via MGH, then NeuroTalk, we finally met last summer. As it is with all "parkies," there is an instant bond and we seem to pick up the communication wherever we left off. As we sat around the pool, you shared some of your wonderfully creative poetry and even played my keyboard. Your music was, as always, simply beautiful. It would be a shame if those creative juices were to stop flowing.

You say you don't know what you have, well, neither can any of us lay claim to that beyond a shadow of a doubt. Just because we shake, walk, talk, fall, and cry like a parky doesn't mean we are parkies. That single fact, I believe, is what keeps us all in this mysterious "cluster" of patients that baffles the medical profession. My motive advocacy-wise or in sharing information through networking avenues has been to repetitively state this fact.

You hit the nail on the head when you said (slightly edited), "We may never find out what exactly is going on with you (us) as there is no test case for you (us). You (We) are the test case. All we (the doctors or ourselves) can do is treat your (our) symptoms. You and I (and the other members of the Holes in the Head Gang) have gone the ultimate mile. We have allowed professionals to "experiment" with our brains in order to find relief from these horrible symptoms from which we suffer.

When I say "experiment," I am not necessarily talking about being in a clinical trial, because I believe the Parkinson's community is one BIG "experiment," in that we have no way of getting a definitive diagnosis. Yet the medical practices of today mandate that we be put into little boxes and labeled, never to be removed unless WE take the initiative to find out more. Doctors play around with an a la carte cocktail of mind- (and body) altering chemicals or we choose to go the au naturale route according to what symptoms we have.

So more power to you if you want to get away from this deep rut in the road to finding recovery. You definitely have earned a break. Research isn't going to find the answers unless they wake up and smell the coffee, i.e. recognize the patient as the most empowered stakeholder. That's why I remain steadfast.

I'm not scolding you, but am just reminding those reading about our purpose (or at least mine). Harley, your inspirational poetry and music provide a very much needed service for those waiting in the wings while science attempts for another 40 years to sort out this mystery of just what Parkinson's is what it does and why no two individualsl react the same to therapies. I just don't want to see anyone die in the waiting room.

Hugs to you; don't stop what you are doing, and remember this little alteration to your favorite slogan, "We have ?????, but ?????? doesn't have us" (unless we allow it to do so).

Peg

[Geoann]

I have always enjoyed reading your material. Be with God, be safe and well.

Doreen

[vlhperry]

Forget my last contact on your facebook. I believe I have the answer to my request.

Good Luck and God Bless,
Vicky

[harley]

i would like to share this because it may help others to look at their condition and take seriously into account what stress does on the body. it will be probably the most insight i have found the hard way as to why symptoms can be so horrible. i will tell all of my personal problems for the rest of you to reflect on the conversion disorder dxd and also to say to others that are going through dramatic stress filled personal lives that it is okay to feel an overload. it is not your fault. if your situation is one that you can get out of.. do it. leave. it is not worth your life. if you cannot change it, and it turns into conversion disorder, that is ok too. it is not you or anything you have done. and it is not a mental problem. it is your brain reacting to an overload of stress and nothing to feel ashamed of.

i am not quitting because im tired of the interaction here online. believe me, i will remain dutifully tied to advocasy which will be abundant in my poetry. i am closing shut a book and opening a new one. my new life is beginning the way I choose it to. though i may not choose to have pd i DO choose how i want to deal with it. i have been through too much these last 2 years which included my husband being arrested for domestic violence, my mother being diagnosed with cancer, finding out my dbs wire was put in the wrong area of the brain, the discovery of my daughter and husband having an affair, going through a very messy and volatile seperation and having to leave the house i knew as home for 10 years. some of these events were situations i had no control over (dbs, husband issues, mother) but some were choices i had to make for the betterment of my overstressed life. (seperation and moving). either way..it was just far too much.

though the internet has been a porthole of support from which i both recieved and gave, it also became an escape which i needed at the time, but no longer do. i have a new life now. what is past is past. what is going on now is what it is. the way i react to it needs to be different. the shock factor which kicked my mind into a type of survival instinct kept me on auto pilot as i flew through the severity of the hardships. now it has is sinking in and this is where i must be cautious as walls need to come down for me to surpass them.

God is working in my life and i have faith that he will continue to.. thats all i need to say. peg.. i still plan on extending my words to help others, just not in this format. i do offer this though..never doubt yourself and learn through every mistake. there is nothing wrong with reaching the genius level of wisdom.

[pegleg]

I love you girl!

Peg

[lindylanka]

Laura,
Many years ago you talked me through a rough patch, even tho you did not know it. I followed the posts of you and others, inspirational, informative, creative, and so so alive. And felt hope. So thank you, and whatever you do, wherever you are, I hope you are accompanied by the blessings that are out there, waiting for you to unexpectedly stumble over them!

Keep well, keep happy, keep safe,

Lindy

[coachmomlu]

Originally Posted by harley

i would like to share this because it may help others to look at their condition and take seriously into account what stress does on the body. it will be probably the most insight i have found the hard way as to why symptoms can be so horrible. i will tell all of my personal problems for the rest of you to reflect on the conversion disorder dxd and also to say to others that are going through dramatic stress filled personal lives that it is okay to feel an overload. it is not your fault. if your situation is one that you can get out of.. do it. leave. it is not worth your life. if you cannot change it, and it turns into conversion disorder, that is ok too. it is not you or anything you have done. and it is not a mental problem. it is your brain reacting to an overload of stress and nothing to feel ashamed of.

i am not quitting because im tired of the interaction here online. believe me, i will remain dutifully tied to advocasy which will be abundant in my poetry. i am closing shut a book and opening a new one. my new life is beginning the way I choose it to. though i may not choose to have pd i DO choose how i want to deal with it. i have been through too much these last 2 years which included my husband being arrested for domestic violence, my mother being diagnosed with cancer, finding out my dbs wire was put in the wrong area of the brain, the discovery of my daughter and husband having an affair, going through a very messy and volatile seperation and having to leave the house i knew as home for 10 years. some of these events were situations i had no control over (dbs, husband issues, mother) but some were choices i had to make for the betterment of my overstressed life. (seperation and moving). either way..it was just far too much.

though the internet has been a porthole of support from which i both recieved and gave, it also became an escape which i needed at the time, but no longer do. i have a new life now. what is past is past. what is going on now is what it is. the way i react to it needs to be different. the shock factor which kicked my mind into a type of survival instinct kept me on auto pilot as i flew through the severity of the hardships. now it has is sinking in and this is where i must be cautious as walls need to come down for me to surpass them.

God is working in my life and i have faith that he will continue to.. thats all i need to say. peg.. i still plan on extending my words to help others, just not in this format. i do offer this though..never doubt yourself and learn through every mistake. there is nothing wrong with reaching the genius level of wisdom.

Wow, Harley, I just got here. already I have learned from your post. I can see you will be very missed around here. Glad I had a brush with you before leaving. Blessings on your life, Harley!