It happens to everyone as they age, I'm sure, but the path many of us are on, has a spiritual component that can only be described, again as always, as being led.

People come and go on this forum, but some of us have stayed. Tom819 referred to me as the mother...lol. But if you ask my friends, they will tell you I have always believed in the potential of this forum to change things.

While running Grassroots Connection - there were only 3 -4 blades of grass actually - I learned so much about dotting your i's and crossing your t's. Just the facts maam and then GDNF swept us up and away for years.

One of my outlets, as you know, was writing all kinds of emails to Michael Fox. and I have finally broken that habit without being viewed as a stalker ......lol...and emerged with the confidence that comes from realizing i was being "led."

I'm not going to define who leads me, that is too provocative, altho it shouldn't be because it is about ...well....doing the right thing... but in different forms, laying down your arms, your egos, and [this one might sting a few] your expectations about what anyone or any country owes you [you is rhetoric].

My journey used to center around the GRC and pdpipeline sites, so my goals were specific, aimed at increasing readership, getting certain people that were making news right then to interview, journalism.

GDNF took me to places i never would have expected to be. Sittting across the table from Stanley Fahn, Tony Lang, Mark Stacy, Jay Nutt - these are top of their field researchers, and we talked [coming from opposing sides] about GDNF [these were the researchers who defended the halt] for 3 hours.

I have been able to meet just about every goal I've set, in large part due to these very forums and 100% by meeting people online.

Altho I knew that there had to be a reason for certain things happening, I didn't devote the time and attention to nurturing and listening to what I was supposed to do next, but it always came...that thing to do next.

And i learned more and more. Making connections is what teachers do; so it was natural to want to share with people here. My "classroom" was left behind and my "faculty room friends" with it.

Sometimes I fought for recognition that I felt I deserved, but for the most part, I love brainstorming, tossing out ideas, and realize that some hit and some miss. Eventually, I saw tho, getting credit was not worth the time spent on it and I became a strategist and investigative journalist of sorts, with dyskinesia and somedays in my pajamas all day.

It could just be the world, it could just be everything, it could be aging, it definitely is pd, but eventually the battle turns to finding energy and motivation. I can still do a lot, but it isn't always pretty. I look weird, feel paranoid, and don't like to go out much anymore. I still do , thanks to my friends and family, but rarely comfortably...I've got this leg that juts out...honestly it makes a clown out of me.

So, finally, I'm looking more within, and am being led by the inner voice, which doesn't care at all who has the best anything. i live simply, i gave up most posessions, attempting to decipher how to be outside of myself - not always succeeding because illness itself make getting thru the day rather self-centered.

Timing is everything- we say. My timing was very significant and as you all know I wanted to be Mike's friend and laugh at his wit as part of my treatment ...lol. I'm supposed to be grateful i suppose, and i am, that he never blocked me from emailing. Having finally conquered that habit, I now spill my philosophical overloads here on the forum. So how can i connect all of the experiences that I've had due to getting pd and having such a successful advocacy run? FIrst of all, I have to eliminate myself from the credits. Be a servant, stay humble, don't self promote, just keep passing along what I can.

There are people here similarly - heck even much more- devoted and instinctual; some are just readers. This forum is filled with trust....and trust comes from being able to consistently feel safe - a no spin zone; no exploiting.

That came about thru communication - honesty, no competition. I am hoping that more inner voices come thru so that we can all decide [remember, organizations work for us and so does the government] how to best spend the time that is gathered for pd and that the human ness of this entire endeavor eventually comes thru.

In the Bible, and i don't know the verse -am i breaking copyright? lol ..it says: it's not by power, not by might, but by the spirit," sayeth the Lord. Ok i'll look it up and come back in case i've really taken it out of context. Where is this group of people headed?.....where are we now and how did we get here? it feels like a group that is going in the right direction by simply communicating. Unless something happens very soon, many of us are not going to see a treatment. But we can look back and see changes; they are far more valuable when it's the 'we', not the 'I' that defines the memories.

Using our inner voices, our instincts, our faith, our spirit, our gut, we can overcome competition, greed, lies, and do great things. Seek to know who you are and what we will need in the coming years. Now is the time for examining priorities and restructuring ....as someone very popular has been saying.

It isn't science, if it lacks this human factor in the equation. It's failed and will continue to fail. It will always stay a step ahead of science.

I'm getting older, and this is where I'm at. It's what has come next for me. It's 'not about me' is the goal, only far more so.

i don't know how you can respond, so don't unless you are comfortable doing so. i'm lucky to have a place to express it; was inpired to do so after feeling reassured from another pwp who understands it in a specific situation, as many reading do likewise I'm sure.

mahalo,
paula

ps - im sure glad Tom819 didn't say I was like the grandmother! I might have rambled forever.

hi Paula

I'm reminiscing today (in fact, I reminisced until after 2:00 am this morning!). Something happened yesterday that made me stop and reevaluate where I am going . . . wait . . . where I WANT and NEED to be going with what time I have left.

Yes, my friends - I am supposed to be uplifting you who visit this site - no that's the PLM site. This is the "brainy" site (Paula and I just discused this yeterday), where I have been told numerous times that people (some) were afraid to post here because we were so "brainy." I'd rather think of the majority of this crowd as "experienced."

Bear with me; I have to get this out of my system. We say so flippantly "Time flies," and indeed it does when watching kids or grandkids grow up. Already our 6-year-old granddaughter doesn't want to sleep over as often at Pappy & Nana's - that hurts. Remember when your kids didn't want you to lean over and give a little peck on the cheek whenever you dropped them off ast school? Or how about this one (maybe I'm the only mother experiencing this), remember when your Junior high-age kid wanted you to drop them off a block away from school? Geez - now it's too unsafe.

Time does change things. When I was a princnipal I didn't need to make notes as I walked down the hall of my little school of 500 pre-K through 5th grades. I would come back to the office with all of those requests "in my head" (no kidding - 10-15) and could jot them on my calendar from memory. Now I can walk from the computer room to the bedroom ad wonder, "What the heck did I come after?"

But I want to contribute to society (and it's not all for my glory, Paula). There are many, many things I do that no one ever knows about. Not fussing, but I often feel like you are talking to me (and others, of course) about doing what we do for glory only. Sure - EVERYBODY wants a little credit for doing something, but just don't let that be your driving force - and it's not mine, although some think otherwise.

We may not have good memories (i.e. remembering stuff to do), but PD hasn't zapped our creativity. Remember our Grassroots Connection (GRC) days? PAN used our website as their mode of communication before they built up their own. But ours was better - why? - because it came from the PATIENT perspective - not politics (although it was in tere) and not to appease every reader. It was hard - sometimes cold - facts. But it had a personal element - rememer the tribute to Milly Kondracke? I dare say you can find another site who kept the hundreds of comments sent in to preserve the difference she and Mort Kondracke made in finding a cure for Parkinson's.

Carolyn was the webmaster and Linda our 4th blade of grass - nothing passed by us that wasnt on GRC pronto (almost BEFORE it happened!)

I wonder if anybody wants GRC back? We did interviews (some by email - some live), and an impressive list. ohhhhhh! gotta stop - back pain and I'm going off - more lat..............

Forgot to say that the verse you mention , "Not by might - not by power - but by my spirit (says the Lord)" is from Zechariah 4:6 . When I retired one of the teachers gave me a refrigerator magnet, and I read it (and try to live by it) . Zechariah was a priest and prophet.

Peg

Sorry to make you concerned Peg, that i was referring to you or anyone. i was just telling my story, and here meant only me, as it happened, because there is competition and idea stealing among all groups - patient and others - as there is everywhere in the world. It took some conscious effort to lay that down and find my "place" in the advocacy process. I am more aloof [not by choice - more like feelings of inadequacy in disguise]....and you are very outgoing and ladylike...lol. So we have different "cultural" backgrounds - that southern drawl of yours is soothing. But sometimes I saw it as brownnosing and when I said so - you always stood up to me and smacked back....well it's ten years later and we are still talking innermost thoughts and feelings.....we must have done something right.

It's just not about that anymore....and it frees you up to make the best use of your words, your time, and what energy you have to just get some things done. Or perhaps to evaluate if we are still productive ..gulp...there I said it. We have to know when to quit. Or at least eliminate some things. I recently resigned from PAN, because I don't have the energy for the PAN forum.

But I'll insist till I can no longer that much can be done online and figuring out how to best do this should be a very high priority. This I know to be true through my own story, and I have ten years experience to back up my conclusion.

So yes i have in the past implied you were brownnosing ...lol.....but not here, not calling anybody anything..... We've talked weekly on the phone for meetings for 7 years! A bunch of ornery, 50-60ish and up pwps [pd engineer excluded] talking every single week for that long - are bound to call one another something at some point! But we stuck it out..through thick and thin, as Carolyn can recently attest to. She had a cere 120 trial that became a tribulation. Eventually tho, I concluded that making contacts [i once teased that peg would work the bathroom if people were in there long enough] was something that you were very very good at. And you used it for the good of all. That is what was important.

Which brings it full circle, to the path now taking on an inwardness as a major part of the journey. To at least think about passing the torch, and hoping there is someone to receive it.

ok i can see some people in the distance laughing and thinking it would be impossible for me to stop advocating. That doesn't help anything lol. And i didn't say stop posting, so let's lower it down with the cheering...lol

thanks good folks,
paula

I read ya, and I have come to respect you for how you stand up to ANYBODY if you believe in something (I think God might even have some trouble when you go through those pearly gates). I can see you now pointing out some protocol they use in Heaven and questioning it). lol just kidding. It's actually an asset; I think I would feel a lot better if I weren't so worried about what others think. Thanks for the 7 years of good lessons. (Are you certified in that area? lol) I consider you (and always will) to be one of my cloose friends, and we've always been separated by hundreds of miles.

We have a mission - and to quote what a little sign that my friend, Judy, gave to my husband; it says: "Shut up; Lead; or Get Out of the Way!"

So I refuse to let petty arguments, opinions, or other trivial things that simply take up time get in my way. And I think you feel that way, also. So to everybody reading this, if some of us are rude, outspoken, or lah out at you on occasion, it has nothing to do with how much we like or don't like you. It's about "time."

Hey - did you see that? I just made us a theme for our next project! Everybody will be wearing a pin that has the face of a clock, and the logo will say (curved around the top" "It's about time" and in the middle of the pin it will say "Cure PD" or "Help Cure PD." You like??? No?(copyrighted)

hugs to ya
Peg

Paula and Peg,

I have walked those roads with you. I have seen your courage, your
instincts - as you put it, your patience, your anger, your highs and
your lows. But always, I have seen you give of yourselves for the good
of others. Granted, there is the hope, of the cure dangling out there
for all of us and the recognition that comes from those who see our
lives as a cause. But mostly - you gave. period. your time, your heart.
and you still do today so many years later.

I wrote this poem for Paula, after first experiencing seeing her go through
distonia. It was a frightening and inspiring. This poem could be said
to a lot of people here on this site that fight day by day, hour by hour
the unseen enemy - Parkinsons. Heres to you!

To My Courageous Friend

You are the heart inside the candle
Passionate
Jumpy with giggles and laughter
Smoldering after spending
Yourself – selflessly
Bright burning – darkness-defying

You are a flame
Refusing to be doused
Stubborn
In silence loud
You re-iterate
Your refusal to become cold
And though you may seem alone
You entice others
To hold their candles high
And twinkle boldly
Sharing, sizzling
Chipping away – purging the dross
To reveal the pure beauty
of your soul – my friend
In my eyes
You are a hero

03/06/06 akc

jingle belle -

WOW! You captured the essence of Paula PERFECTLY! I can see her and hear her when I read your words.

She is the first person I contacted with PD - on the internet - in the dark - she reached out and I grabbed her hand - and we never let go.

Paula and Peg - two of my heroes - can't wait to see you!

Yes, that has captured the essence of Paula and many others like her.

I have worked with Paula...the first PWP I ever met...and Peggy...the second I met, for something like 10 years now. They remind me of the 60s and all those who chained themselves to the gates in protest...only the protest today is for better therapies and research funding and the like...and a cure would be nice too!

I DO want GRC back online!! Paula, you and I have talked on the phone about this. You worry that there are too many similar sites currently online and I disagree with this assessment. GRC brought something to the PD community that I don't see currently online anywhere...correct me if I am wrong...interviews with the likes of Stanley Fahn, Tony Lang, Mark Stacy, Jay Nutt...and with the movers and shakers of the PD community.

Peggy is amazing to me. I have watched Peggy over the years...never giving up and never giving in to PD! She and Paula both could be sitting quietly in their chairs at home knitting, but they are not. The words, move it or loss it are not lost on either of them. Carey is another (indigo) who belives these works.

Today I can see and hear in Peggy and Paula that they both would like to give up and give in, but they are driven souls with purpose in every minute of every day.

There are many in the PD community who believe in Move It or Loss It.

Paula, you accurately described yourself when you said, "I became a strategist and investigative journalist of sorts, with dyskinesia and somedays in my pajamas all day." And, today you're are still living with all of these words. (Bits of memory are returning as I type: How many times did we walk the beaches of the East Coast of FL together! and nibble on ice cream cones! back in 1999 and 2000, before I moved out of FL.)

Time does march on, as Peggy stated. I remember when I was the only one with grandchildren. Peggy reminded me often of your envy for me having four grands. Now she has three, Paula has one and I still have ONLY four! Linda H is the only one yet to have grand kids bless her life. I mention only Paula, Peggy, Linda and myself, as we are still a pretty tight group.

Over the years I too have watch my granddaughters change...the oldest of the four...one will be 19 in May and needs no one anymore. I think this is one of the hardest parts of being a grandparent...when they no longer need you to make their life whole. The next oldest just turned 11 and doesn't snuggle on the sofa watching TV anymore...today she is on the phone to the point that when the phone rings and Amy is at home, no one answers the phone...that job it left to Amy.

I was there all those early years, but I think it was the fervor over GDNF that truly brought me to a different place regarding clinical trials. I remember the scurry to construct the GDNF history pages on the PPP website that are still there today and will always be there, I worked some long webmaster hours back then.

I was at Peggy's for a week in February. She copies a CD for me that contains a song by Rascal Flats. The lyrics include this:


Like so many of us, I too don't want to be caught "sitting down" when the end comes for me. I want to be found still "running."

Over the years so many new PWP friends have come into my life. I treasure all of them. Some are quiet and some pick up on the fervor and take off runnin'

For me my PD community is my family and this family keeps me sane. I spend my days doing what I can and sharing with this family of mine. So, many of them are only typed words in a message board, or in an email or a private message. Some I hear from on rare occassions, but they are there. There is something about this PD community of ours, no one loses another, regardless of the physical distance or the distance of time...we are always there for one another.

I don't have anyone in my family that I can depend upon and I have lived alone for almost 24 years now (21 with PD)...maybe my younger daughter, but she lives several hours away.

Okay, I will quit here before I get myself into trouble!!

Good night,
Carolyn

Paula, Peg, Carey, Carolyn,

Its a funny thing, when each of you mentions GDNF as a catalyst or epiphany in bringing thought, conviction and action together for you -
For me, it was sort of the bottom of a black hole. I had gone on Neurotalk
only briefly years before to chat with Laura Dean(harley) attracted by having
read her poetry. But soon lost this site and password, and connection to
harley, while trying to balance too many balls in the air, with virtually no
support.

Coping with trying to find out what was wrong, coping with diagnosis, educating myself as to what I was facing, raising three children,
they were ages 2,3 and 9 when my symptoms started. And working a full
time job with a 45-75 min each way commute.

I bulldosed new ground, at work insisting on not being shuffled into a $400 cut in pay job after i disclosed that I had pd. I fought for accommodations and training on a new position, and pay raises. after 20 yrs, i was allowed, to work from home for 3 more years till i couldn't do that any more. I went on SSD right aound the same time i entered into the GDNF study. My husband and I hadn't been getting along for years so i moved out just b4 my surgery.

I guess because of the double blind aspect of the study i was very isolated. It wasn't until much after that I began finding out that there were others as disappointed as I and when I first met Paula and Linda and Peg and others.
I remember how astounded I was at Paula's indignation of what i had
gone through and my dissapointment at the trial's abrupt end.

I don't think i would have the courage to do it again. I am certain that ((in my particular case) it halted the progression of the disease for at least 3 years. Not a dramatic get up from bed and walk case like some but certainly a positive for me. and i am grateful for it.

Every day that I say i have pd, it does not have me, and every time i am able to be a help to some one who is struggling - gives me inner encouragement to fight my own battles.....

as - it is together that we form the notes of this concerto we call - life.

I'm touched and grateful for your kind words. Stubbornness goes a long way. Each of the people in this thread, along with so many others, are talented, devoted and brave. Jingle belle was in the GDNF phase II trial- cancelled. Peg was, before that, in the Spheramine trial - cancelled. Carolyn was in the Cere 120 trial - cancelled. Think that should say it all.

proud to call you all friends,
paula