i am going to ohsu in portland, oregon on monday to begin a re-evaluation of everything. side effects, med interactions, symptoms, stress, misplacement of dbs wire... yada yada yada. maybe, just maybe... they will find out how to put the puzzle of "me" together the way it is supposed to be. please, say a prayer. it has been a 26 year long journey. maybe it is the end of this road and i can say "i dont have pd and it doesnt have me." or maybe i will hear the usual, "we cant figure out what is wrong with you." i know one thing.. i am so tired of this that i will not leave that building until i get a better answer than all the years of "possible" or "atypical" or "idopathic" or ANY words that are vague and leave way too much room to throw a question mark in there.

i survived something very few people do. when i was 15 i had shingles/menangitis/encephalitis. it was acute and i will never forget that pain as long as i live. they didnt think i would make it. i wasnt supposed to. they told my parents it was not likely that i would. but I DID! and a couple years after that, i had menangitis AGAIN! and I lived through that too! and dammit, i wanna know what got fried. i know something must have.

i am not going to settle for some crappy label because they dont want to take time to look at my particulars. over ten years ago a mds told me i had an anxiety disorder not pd and i ended up attempting suicide and put in a mental hosp for ten days because of the drastic med changes. almost died there too. but i DIDNT. i had a petscan by another mds who told me i had multiple system atrophy and had about five years to live. I went to another mds who stated i needed to face my dxd of "advanced pd" and i needed to find an assisted living place to be taken care of. they have screwed with me too long. i have been on far too many different medications and suffered with far too many interactions and side effects. i have run the gammet in emotional changes due to these damn meds. i even had one of the dbs leads put in the wrong spot and after 26 years of **** ups.. I am past exhaustion. I AM MAD!

i KNOW i can be better. i know because i was! a member of this site can testify to it... cleveland clinic can testify to it, as well as dr freidman of rhode island.while there i was virtually symptom free. i wanna know what did it. because when i came back home, the symptoms returned. along with some new ones. like grand mal seizures and extremely low blood pressure and total lack of balance creating instant falls.

i am armed with ammunition in the form of 38 pages of documentation from the cleveland clinic. doctor notes, statistics, nurse observations, and bunches of stuff that point away from the pd dxd. i have been to every movement disorder clinic in the seattle area. they have nothing more to offer me. i have an ace to play at ohsu. that is where my botched dbs was done. and i just happen to have a friend in portland who introduced me to a pulitzer prize winning journalist who writes in portland. and has taken an interest in this dbs fiasco. the way i see it, that fact alone may open there eyes to me.. ME! not some stupid label.

please.. say a prayer.

please

Harley, please know that warm thoughts and good wishes are coming your way. You have been through so much - too much! I hope only good things for you.

Kind regards, Jean

In one of my generic health newsletters I subscribe to it talked about how some people are so incredibly sensitive to allergens, chemicals, pesticides, that a tiny amount will do them in. The example was a woman who developed some very strange symptoms no one could explain...when she moved out of her house to have some work done, incredibly, they went away. When she moved back in, they returned. She moved out again and had the house completely cleaned with natural, organic things, but again, when she moved home, the symptoms returned. In fact, her daughter went over there to get a shirt from the closet of the newly-cleaned house and when the woman put on the shirt, her mysterious symptoms re-appeared. Needless to say, she moved permanently.

Who can say whether you have a sensitivity to something? I have often wondered how many PWP might "get better" if they moved to a different locale, cleaner air, less crowding, better non-flouridated water, etc.

I hope you get the answers you seek and please share with us what you find out. I am personally amazed you have been dx'd with PD for 26 years-don't the MDS, at least one, take a skeptical view of your dx in light of that amount of time? I guess no one wants to say 26 years' worth of medical treatment/dx was wrong, boy, would that doc ever be in the medical establishment doghouse.

************
Honey,

You may not realize it, but asking for "Divine Intervention" could be the very thing for YOU.......mortal doctors may only see the outer human-being, yet Our Creator knows ALL about US!!! I pray to inspire someone with the burning desire to find the CURE that is out there just waiting "To Be" Found sooner rather than later! Keep looking forward and UP!!!

Will say an Extra-Special Prayer for you tonight; God bless you, too.

Mike

P.S. I am "Southern" so it is just 'natural' to call a Lady Honey, Honey. Hope you receive it as such.

Harley,
I wanted you to know you are in my prayers, too. I know you have been thru a whole, whole lot - but I do believe that the gestalt of your life can change, and that you can- that you are becoming who you need to be. Don't stop now, girl.
Fiona

jean.. i will definately let anyone interested know.

lurking.. i have often wondered if it isnt environmental. washington state has the largest population of people with ms. when the rain begins, i can definately feel a change. and the same when the sun comes out. the humidity isnt bad, but there is alot of mold and mildew about.

the docs have laid other dxd on me as i stated. anxiety disorder, conversion disorder and epilepsy to name a few. i will take partial blame here as i have not followed through with their treatment plans for one reason or another. i am scared to death to be honest. i know how to live with this pd dxd. though i dont want it, i know how to live with it. i have had it so long, i dont think i would know how to live without it. at first anyway.

mike.. i am His child and my life is in His hands. i am also stubborn and need to remember that He cannot do His job if i keep trying to do it for Him. there is some kind of purpose He has for me here. im not sure what..

as far as calling me honey.. i dont mind one bit. actually, it is sweet. i have been called alot worse lol i have my waders on standby for when i need their protection when the waves of bull crap spill on my shore. "sigh"

fiona..
you got it sweets. im not gonna stop now until the door is wide open

Harley,

Thanks for your kindness and taking my words as they were meant to be as "kindly". I was taught to try to treat others as you want to be treated, as in the "Golden Rule". Think most people today think it is a brass ruler....LOL !!!

I have many health issues besides PD, that was just the latest in a long list that started with spinal cord problems reaching a critical point in late 1998. Wow.......it is hard to see that almost 12 years have past since my back injury, it was a herniated lumbar disc. Long, long story attached to my "Bone History"; hmmm.......I could write a book......ha-ha-ha!!! Maybe one day I will.

Enough typing for this session, fingers are getting stiffer with each word. Take care and keep looking forward and upward because God is in control of ALL!!!

Mike

Laura Jean, I have not stopped praying for you and likely never will stop. I am going to church tonight and will speak your name aloud at the prayers. I believe I'll also ask for angels to guard you--you know, the big guys with the swords.

Peace.

Harley,

how did the appointment go?

jean

well, the 1 1/2 hour appt turned into 4 hours and the conclusion was.........
they dont know.

at least the definate "parkinsons disease" dxd didnt come. they gave me the good old "extremely atypical idiopathic possibly non progressive maybe post-encephalitic strange form of pdism." being somewhat overdramatic here with the concensis but in essense thats where we left it.

they saw me off meds, and my reaction to stalevo as it was absorbed then finally on med-- stalevo. they watched me walk, do all the gymnastics they put you through, tapped me everywhere they usually do and we talked through-out, they heard my side of not believing it to be pd, i heard their side of what they meant by pdism. the doc actually contributed her opinion of using the "ism" for a dxd.. she hates using it. "its old termanology that should not be used any longer." that was very much agreed upon. i talked to her from my side of the fence and she listened. finally i let out the tears of frustration that have laid behind a 26 year wall that had been built between the patient/doctor relationship. and once i started, it was hard to stop.

by the end of the appt (at 7:00 pm after everyone else had left the building) me, the doc, the head doc and my friend taking notes and asking her own questions; were all brain-fried (pardon the pun) but we had reached a level of mutual respect. the masks came off and it was no longer a relationship between doctor/patient, but rather person to person. both sides gained insight to this horrid thing too long called "pd" so we left it at this:

i need extensive onsite evaluation. this would require me being able to be available for multiple visits at a same location. i will need to be open for neuropsych evals as well as conversion disorder evals. they in turn will no longer label me with pd. in the interum, i will have a neurological disorder. until i am able to get to that, i will continue with stalevo, artane, clonazapan and celexa, dropping flexerall and mirapex.

i think i got what i needed out of the visit. i will begin this later down the road. my mother has 3-6 months to live. my focus needs to be with her.

thats all for now folks