[paula_w]

Earlier today, Linda H. sent an article from Kaiser Network about bias in reporting of trial results; how articles are written by company employees, signed by trial investigators, and negative results don't get published at all. Most of us have read articles like this.

I thought about all the other deception that fills the world and realized that no one, no one, knows what is real.

Then I recalled a thread in the old Brain Talk titled "What is Real?" by pegleg. I returned the email and relayed this to the pipeliners and it turns out peg had saved her original post - written in 2000. She has the responses too but hasn't located them yet. There were many many responses - it was one of the longest threads ever it seems.

So with a different slant on it, that of the drug industry racket we are consistently becoming aware of, along with the bail outs and the greed, I thought it might be interesting to make a What is Real - 8 years later. But I don't care where it meanders - it's a question that can be applied to anything.

First, tho, I'm going to repost Peg's introduction to the original, which some of you will remember. Then just take it wherever you like.


Date:
27 Nov 2000

Lots has happened recently that made me write this - in keeping with John Lester's "sense of community" in MGH Forums (www.braintalk.org) and PLWP, that he wishes to preserve. Sorry it's so long, but worth "pondering."

From The Velveteen Rabbit: “For a long time he lived in the toy cupboard or on the nursery floor, and no one thought very much about him. He was naturally shy, and being only made of velveteen, some of the more expensive toys quite snubbed him. The mechanical toys were very superior, and looked down upon every one else; they were full of modern ideas, and pretended they were real. . . . . The Rabbit could not claim to be a model of anything, for he didn't know that real rabbits existed; he thought they were all stuffed with sawdust like himself. . .

The Skin Horse had lived longer in the nursery than any of the others. He was so old that his brown coat was bald in patches and showed the seams underneath, and most of the hairs in his tail had been pulled out to string bead necklaces . .
.
"What is REAL?" asked the Rabbit one day …. "Does it mean having things that buzz inside you and a stick-out handle?"

"Real isn't how you are made," said the Skin Horse. "It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real."

"Does it hurt?" asked the Rabbit.

"Sometimes," said the Skin Horse, for he was always truthful. "When you are Real you don't mind being hurt."

"Does it happen all at once, like being wound up," he asked, "or bit by bit?"

"It doesn't happen all at once," said the Skin Horse. "You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in your joints and very shabby.
But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."
*********************************************** **********************************************
What does this story have to do with my post today? Are cybernet people real? Are they any less real than those people who surround us every day . . . our family?. . . our co-workers?…people in our community? Join me in my quest for “What is real?”
This excerpt causes me to “ponder” the question (may I borrow your word, Bea?). I hear people talk about the “real” world and the “internet” world, as if they are separate entities. They are both very real … in fact, the internet world is powerfully real.
If I receive a telephone call from a bill collector telling me my payment is overdue, do I file it away and say, “It’s OK; it’s not real!” Not only was the person on the line real, but the debt is real, too! Or if I receive a letter, the person on the other end of the return address is as real as you or I. Why should the computer mode of communication be any different?

I receive a lot of email from people I have never met – they know me better than I know them from reading my journal entries. But after correspsonding a time or two, I get to know them . . . and they ARE real! Just as I am real. I would NEVER be ugly to them because I disagreed with something they said. I would be tactfully opinionated, expressing my views. Why do we think the internet gives us permission to be harsh and condescending in our responses to others? The same interpersonal rules apply!

I finally hooked up on ICQ Chat with Jacinta, my newfound friend from Australia. She is a teacher stuggling with advancing PD. We immediately “connected.” We talked about teaching, meds, coping strategies, and last but not least . . . our faith.

“You seem to have a strong faith,” Jacinta typed. Now talk about one-way communication! I was hopeful that my spiritual personality was showing through my journal entries and bouts of mood swings and busyness. And although Jacinta and I come from diverse backgrounds and faiths, I respected her, and vice versa. Jacinta has never been touched by me – I’ve never even heard her voice, but does that make her less real? Her real words of concern, of pain, of questions, and of sincerity make her real.

Just a few days ago, my house was full of people I met as a result of PLWP – only one had I not met previously. Ryan and I had emailed, typed and voice chatted, having met for the first time at the Unity Walk in NYC. I never stopped to ask I he was real – it was a given. I met John in NY, also. But I didn’t “really” know these two guys – for all I knew, they could have been psychopaths! (Seems I’ve heard that word before!) I trusted them because I valued their posts as real – coming from real people.

It was my first time to meet Sandy (of PLWP Parkie Porch), but we had chatted and corresponded. There was never a loss of what to say or do when we all met in person. We now end our chats and emails on a stronger note. “I love you,” Sandy said on the telephone letting me know that she had arrived safely home. And I return the closing, in a real sense of the word.

What makes for a real relationship? It’s not built overnight, for certain. But relationships built over the internet are strong. For we focus on the content of what people say and not how they look. Love makes you real, as our little story so vividly illustrates. Are you treating the person on the other end of your chat as real? … with real problems and needs … and real words to share … from the heart? I hope today’s post reminds us to treat others like we want to be treated … with love.


And while the Boy was asleep, dreaming of the seaside, the little Rabbit lay among the old picture-books in the corner behind the fowl-house, and he felt very lonely. The sack had been left untied, and so by wriggling a bit he was able to get his head through the opening and look out. He was shivering a little, for he had always been used to sleeping in a proper bed, and by this time his coat had worn so thin and threadbare from hugging that it was no longer any protection to him. . . He thought of those long sunlit hours in the garden -- how happy they were -- and a great sadness came over him. He seemed to see them all pass before him, each more beautiful than the other … and … the wonderful day when he first knew that he was Real. He thought of the Skin Horse, so wise and gentle, and all that he had told him. Of what use was it to be loved and lose one's beauty and become Real if it all ended like this? And a tear, a real tear, trickled down his little shabby velvet nose and fell to the ground.

And then a strange thing happened. For where the tear had fallen a flower grew out of the ground, a mysterious flower, not at all like any that grew in the garden. . . It was so beautiful that the little Rabbit forgot to cry, and just lay there watching it. And presently the blossom opened, and out of it there stepped a fairy.

. . . And she came close to the little Rabbit and gathered him up in her arms and kissed him on his velveteen nose that was all damp from crying.

. . . "I am the nursery magic Fairy," she said. "I take care of all the playthings that the children have loved. When they are old and worn out, and the children don't need them any more, then I come and take them away with me and turn them into Real."

"Wasn't I Real before?" asked the little Rabbit.

"You were Real to the Boy," the Fairy said, "because he loved you. Now you shall be Real to every one."

And she held the little Rabbit close in her arms and flew with him into the wood.

Thank you, John, for the inspiration!
------

And thank you Peg! Back to the future - 2008 - and many of us are still here, new location but still friends. Peg was proven right about friendship in cyberland being very real. But what is real in the world that we can count on? What is truth?

paula

[rosebud]

first how do you define "real"? For me reality is just a state of being. My favorite 'reality" story is Pinocchio who wants to be a "real" boy. I have often said that Pinocchio is my soul-mate if there is such a thing. Quantum reality has changed our view of the world, we no understand that we can look in finite detail at what is at the very core of our existance.....and it all comes down to what appears to be nothing. I have understood for a long time that color does not really exist in the sense we know it. We only know color through the design of our eyes to perceive wave lengths. We don't even know if the guy standing next to us in a bank line up, or at the grocery store see's what we see looking around. We do know he probably doesn't. "Truth" and "reality" are very closely related. I could never be a lawyer as I'd probably loose my mind trying to understand truth. Right now I'm giving myself a headache and I badly need a shower. So I'll leave you with this post which could go on for hours ....reality is a very individual thing.

[paula_w]

Ouch , don't want to give you a headache. I wasn't clear enough. My thoughts behind the post are based on the deception that is so prevalent [50 billion dollar swindle - it wasn't real - crimiiny ] and wondering if anyone knows what is real about anything. Then there is the media...

Peg's reason for her question was different; but for some of us, a pleasant trip down memory lane.

Anyway, bringing it here to pwp and other conditions, we are fed biased results of drug testing and much is withheld altogether. We are given medicine that isn't real and even have surgery that isn't real, but are told it could be real, and the consumer must struggle with What is Real until unblinded.

Peg's was a much more positive thread...lol. I'm whining.,,but serious. We don't know what is real about much....we are fed just enough info to come to an incorrect conclusion. This effects our lives to a large degree. Knowledge is power, but it is withheld.

paula

Oh, I noticed something positive tho - 8 years ago we were just trying to figure out the socialness of the Internet - now we are getting ready to do our own research. We, in this manner, could end up being what is real...far more real than those more concerned about profit.

whatta ya know - we are real. and they said you shouldn't go on the internet !!

[Fiona]

Paula,
I think I do know what you're talking about. It's one reason I haven't been posting nearly so much...after the revelations this summer about conflicts of interest in the medical world - it just seemed like the more I became informed, the more grotesque and unbelievable it was. I kind of fled the country feeling overwhelmed with uselesness and a simultaneous serious decline in my own condition - and this was before the economic crisis truly hit, although I could feel its inevitability in the winds before, because it was starting to look like everything on which we had based our trust and our feeling of advancement as humanity in the technological age, even the development of civilization through scientific materialism, suddenly seemed horribly undermined by corruption, by bias - cultural, market, and otherwise. And our feeling that we could find wisdom through objective observation, through applied technology, and the sophistication of technique seemed to add up to nothing when so easily thwarted by dishonesty, clumsy inefficiency and its coverups, etc. I looked at my father, who had worked on the world's first computer back in the '50's, and said "what hast thou wrought?" Just the very revelation that many of the different brand-name products that we buy and are advertised to us are actually all exactly the same thing made by a couple of plants in China, affixed with different labeling and different marketing schemes, was somehow really a disorienting and mind-boggling concept for me.

But I feel somewhat different now. Most of that has come from realizing that at my core, I have to determine my own reality. And that thought and intention do determine action and result. And that healing does come from within. I have "known" that for a long time, but it wasn't until the last few months when, far away from all that I knew and loved, I lay there and thought well, who am I really? And what would it feel like and who would I be if I was a person who had more than enough serotonin and dopamine in my body? whose sense of life energy was not impeded? After all, energy flows through our universe constantly around us...why shouldn't I have enough to be able to live and walk around and do what I was meant to do? And I realized that the answers lay nowhere but within myself. Some kind of mysterious process occurred in me after that, where there became some part of my core that could feel and depend on its own strength with a sense of certainty, and a determination that I could wield my own strength against whatever it was that was out to vanquish me. It's hard to explain. A feeling of inner certainty and truth started to become more than an attitude, more of a real experience that I could absolutely rely on.

Some of this I achieved for myself by turning to ancient and traditional wisdom as imparted through my contact with some very special indigenous peoples. This was a very strong experience for me that gave me a sense of continuity beyond the parameters of what we think of as our times. And some was by connecting to the love and good intentions of many people who are still out there, who are sincerely doing their best to do good despite a corrupt system all around them and a world in shambles. That love IS real, and there are still good works being done, and many people I think have gotten inadvertantly caught in a system that when they stop and deeply examine themselves, they realize has compromised them greatly. But as you and I have found out, Paula, that discovery can be shattering, and it's a great struggle to come to terms with, both in oneself and others.

But I think this whole process of examination, of profound disillusion, is very necessary for humanity as a whole as part of the process of - at the risk of grandiosity - but global healing really. The transition to a new paradigm that respects our planet and the people on it - all life on it - and realizes that there are more important things we should be cultivating than the ability to consume at a more and more relentless and ultimately heartless pace.

I think that's why I have thought of PD as a profound disease and one that is strongly emblematic of our times, because it concerns the very core of life energy in a way. Movement is life. SO what we are confronting physically is the depths of what it means to be alive, to take action, to be real. And our struggles and suffering I feel are tremendously important to the world's progress, because our experience can resonate in an exponential way as the rest of the societies around us come to terms with illusion, the limits of how we thought we could define and experience the material world. I realized that if I was going to live, I needed to change something about myself so that I was not that person who would be sick in that way - I can't find other words for it. But I needed to change, to admit the mistakes of my past, to take responsibility for my actions, to live utterly sincerely and to accept when I feel I have done my best, and then trust another power to take care of my destiny. To discipline myself to think positively, more even-handedly, especially in moments of hysteria and anguish. To humble myself and appreciate everything around me with great intensity, and live fully as possible in the present moment. The present moment - that's what we have as our only reality - but paradoxically to balance that with the realization that the seeds of change too are in every present moment, and that what we do now will shape and define the reality of the future.

I don't know if this sounds like gobbledygook and maybe it does. It's hard to explain. However, I do feel different than I ever have in my life. My family says I seem totally different than I have ever been in my whole life, and I do find that I am more and more easily restructuring my responses to life. And I have no doubt that I am in recovery from this disease. On a practical level, it has meant being somewhat protective about my own energy and sharing that - at least for the moment. But also it has meant just accepting that I have to do my own research, trust my own instincts about things, and make as informed decisions as I can, based on what I know. Or based on my knowledge and trust of the intentions and skills of the people with whom I exchange anything. However, I am finding this to support my inner process pretty effectively. It's quite a journey though. And I salute my stalwart and valiant PD knights errant who accompany me, whether I have found you in flesh or spirit.

[paula_w]

Fiona, you are so eloquent and I so very much thank you for expressing precisely what I feel. And your solution is the only way of course! You are the second person to present "look within" as a serious need in their lives in this manner, for behaviors as well as things like nutrition, etc. Boy do I need work!

I think you just typed the perfect post. Sometimes I feel very weird about posting on certain topics, but on this one it was worth the risk to draw out your words of grace and wisdom.

I wish you wellness in abundance!
paula

Originally Posted by Fiona

Paula,
I think I do know what you're talking about. It's one reason I haven't been posting nearly so much...after the revelations this summer about conflicts of interest in the medical world - it just seemed like the more I became informed, the more grotesque and unbelievable it was. I kind of fled the country feeling overwhelmed with uselesness and a simultaneous serious decline in my own condition - and this was before the economic crisis truly hit, although I could feel its inevitability in the winds before, because it was starting to look like everything on which we had based our trust and our feeling of advancement as humanity in the technological age, even the development of civilization through scientific materialism, suddenly seemed horribly undermined by corruption, by bias - cultural, market, and otherwise. And our feeling that we could find wisdom through objective observation, through applied technology, and the sophistication of technique seemed to add up to nothing when so easily thwarted by dishonesty, clumsy inefficiency and its coverups, etc. I looked at my father, who had worked on the world's first computer back in the '50's, and said "what hast thou wrought?" Just the very revelation that many of the different brand-name products that we buy and are advertised to us are actually all exactly the same thing made by a couple of plants in China, affixed with different labeling and different marketing schemes, was somehow really a disorienting and mind-boggling concept for me.

But I feel somewhat different now. Most of that has come from realizing that at my core, I have to determine my own reality. And that thought and intention do determine action and result. And that healing does come from within. I have "known" that for a long time, but it wasn't until the last few months when, far away from all that I knew and loved, I lay there and thought well, who am I really? And what would it feel like and who would I be if I was a person who had more than enough serotonin and dopamine in my body? whose sense of life energy was not impeded? After all, energy flows through our universe constantly around us...why shouldn't I have enough to be able to live and walk around and do what I was meant to do? And I realized that the answers lay nowhere but within myself. Some kind of mysterious process occurred in me after that, where there became some part of my core that could feel and depend on its own strength with a sense of certainty, and a determination that I could wield my own strength against whatever it was that was out to vanquish me. It's hard to explain. A feeling of inner certainty and truth started to become more than an attitude, more of a real experience that I could absolutely rely on.

Some of this I achieved for myself by turning to ancient and traditional wisdom as imparted through my contact with some very special indigenous peoples. This was a very strong experience for me that gave me a sense of continuity beyond the parameters of what we think of as our times. And some was by connecting to the love and good intentions of many people who are still out there, who are sincerely doing their best to do good despite a corrupt system all around them and a world in shambles. That love IS real, and there are still good works being done, and many people I think have gotten inadvertantly caught in a system that when they stop and deeply examine themselves, they realize has compromised them greatly. But as you and I have found out, Paula, that discovery can be shattering, and it's a great struggle to come to terms with, both in oneself and others.

But I think this whole process of examination, of profound disillusion, is very necessary for humanity as a whole as part of the process of - at the risk of grandiosity - but global healing really. The transition to a new paradigm that respects our planet and the people on it - all life on it - and realizes that there are more important things we should be cultivating than the ability to consume at a more and more relentless and ultimately heartless pace.

I think that's why I have thought of PD as a profound disease and one that is strongly emblematic of our times, because it concerns the very core of life energy in a way. Movement is life. SO what we are confronting physically is the depths of what it means to be alive, to take action, to be real. And our struggles and suffering I feel are tremendously important to the world's progress, because our experience can resonate in an exponential way as the rest of the societies around us come to terms with illusion, the limits of how we thought we could define and experience the material world. I realized that if I was going to live, I needed to change something about myself so that I was not that person who would be sick in that way - I can't find other words for it. But I needed to change, to admit the mistakes of my past, to take responsibility for my actions, to live utterly sincerely and to accept when I feel I have done my best, and then trust another power to take care of my destiny. To discipline myself to think positively, more even-handedly, especially in moments of hysteria and anguish. To humble myself and appreciate everything around me with great intensity, and live fully as possible in the present moment. The present moment - that's what we have as our only reality - but paradoxically to balance that with the realization that the seeds of change too are in every present moment, and that what we do now will shape and define the reality of the future.

I don't know if this sounds like gobbledygook and maybe it does. It's hard to explain. However, I do feel different than I ever have in my life. My family says I seem totally different than I have ever been in my whole life, and I do find that I am more and more easily restructuring my responses to life. And I have no doubt that I am in recovery from this disease. On a practical level, it has meant being somewhat protective about my own energy and sharing that - at least for the moment. But also it has meant just accepting that I have to do my own research, trust my own instincts about things, and make as informed decisions as I can, based on what I know. Or based on my knowledge and trust of the intentions and skills of the people with whom I exchange anything. However, I am finding this to support my inner process pretty effectively. It's quite a journey though. And I salute my stalwart and valiant PD knights errant who accompany me, whether I have found you in flesh or spirit.

[pegleg]

My response here won't be nearly as witty or eloquent as anyone else who has posted here, but it's from the heart.

Eight years ago many of us were stepping through life on faith . . . faith that whatever the doctor prescribed we did it. If he/she said "Take two of these every 3 hours," then by golly, that's what we did. If we cut ourselves and the doctor said, "We need to sew you up," then that was it - case closed. We actually believed that all professionalsl were (ahem) - professional, and all ooof those working in research for Parkinson's were personally connected and dedicated to finding a cure. We thought all of the Parkinson's orgs really did care about helping all of us share the burden and find a cure. What I am about to say is "reality."

Eight years later we have learned so much more - and it could be that we know "too much." We found our safety net on the internet when a bunch of young onset people with Parkinson's had their lives interrupted by this devastating disease that we didn't understand and were too overwhelmed or embarrassed to ask anyone about. You may remember some who don't visit here (but may still lurk around at times) that taught us so very much.

There was Michael - the former teacher - painter - who found success in selling some imported furniture. Michael knew everything about nutrition - antioxidents and toxins in our environment. I really miss his sense of humor, but we learned that just because the FDA has "approved" something doesn't mean it is good for you - and it may, in fact even be bad.

There was Em who kept her identity very private and was so bright, but would not lay claim for writing anything for fear that the disability police would catch her having all her faculties and make her give up her long-term disability. I still keep in touch with her - and she just had DBS.

Charlie still sticks his head in on occasion. This guy impressed us so by being the lighting director on the popular comedy "Frazier." We watched as Charlie struggled with working and tryiing to keep up with his 5 kids and wonderful wife who designed costumes for Disneyland. Charlie battled this disease and has now had DBS and has helped so many who had questions about this therapy.

Mischef from Canada let us walk with her through the fetal cell trials - having had sham surgery the first time. Then her dyskinesia became so bad after she got the "real thing," that the study was halted.

We had caregivers like (What was her name???) from Australia who took care
of her hubby - Fabs. She could bring the "happy" out of everyone. My list goes on and on - and I hope some you who walked that part of history with me will mention a story or two. But what I am trying to say is our "purpose" for coming here is a 180 degree difference today.

We held the hand of Tim, who was misdiagnosed as having PD, but had MSA, one of those really bad boys in the Parkinson's Plus group. Tim the pharmacist lost his job and began to fade fast - and he looks down from Heaven on us today. We were vicariously living that hell with him as he became bedfast so quickly as his wife and two young kids tried to understand.

We had Bren and Nan who started the "reality" thing with PLWP. Everybody met at a rock in Central Park at the PD Unity Walk one year, and there it began. These "people" authoring all of those posts were real - flesh and blood - who figured out that we had a lot to offer each other. And we did – we chatted regularly and talked over the phone and everyone cared about finding ways to cope with Parkinson’s.

Today, our eyes are set on the prize – we have let 8-10 years pass by with researchers yelling “A cure in 5 years.” We became weary of the pharmaceutical companies and researchers crying “Wolf.” Today we have the expertise and time vested in knowing about all the ins and outs of getting treatments approved. Many of us have given our very own bodies (while living) to science in hope of finding a cure. Yet we wonder how many “Five more years” it will take.

I still love the social part of being here in cyberspace. It makes me feel warm inside to help someone else learn about this disease I have lived with 14+ years, But I also have a mission – find a cure – before I become one of the statistics. This is reality. We cannot pretend it away – there is an urgency that we have never experienced so vividly.

HELP – HELP – HELP! Any way you can – but help us to restore trust in each other – in our pharmaceutical industry – our organizations – and in ourselves. Don’t you dare come here trying to “sell” us something – we only want the real thing.

Now I’m off (meds not working) from getting so emotional. You take over and I’ll be back later (sigh)
Peg

[lindylanka]

Paula, Peg, Rosebud, Fiona,
Thank you so much for your posts, the old and the new, and their special kind of clarity. An acupuncturist who worked with me before my dx told me that I had a 'stuck' condition that reflected where my life was at, and that I would need to unstick my mind and spirit to work with what I had got, no matter what box the medical world would eventually fit me into. What is real for me now is to dissolve the boxes that I, and the world around me conjure up, till there is no separation, till everything is workable with, to clear the complications and the cloudiness. Fiona, what can I say, your words resonated so much , and Paula thank you for starting this thread, for having that kind of courage....

Lindy

[pegleg]

I like that - "unstick your and mind." This makes for a good analogy - our thermostats do get often stuck, and the only way to "unstick" them is to change it manually (yourself). That isn't to say that you don't do everything without help.

I was rememberiing so many others who were here contributing so much 8 years ago. (When I say "here," I mean the original Braintalk Communities. For those of you who do not know the history, Something happened there. I don't know what, but its administrator and our friend (he even visited me in Tennessee), John Lester, changed jobs from MGH (Massachusetts General Hospital), but tried to keep the forums running on his own. Old posts were lost and John seemed to drop off the face of the earth.

For weeks (maybe even months), the forums were down with little or no explanation. Numerous attemps were made to contact John or anyone at MGH - all to no avail.Then Doc John came to the rescure with what was called Braintalk 2 - orginally started to fill in for the original until it came back online. The wait got longer and longer, so this site was started (actually Braintalk 2 which we renamed Neurotalk.)


Anyway, that's the history behind where and why we are on this forum. But last night I thought about more voices from the past who h elped me so much: Toad - his greatest drawing card was his PLWP journal. He could be funny and serious at the same time, but you went away from a talk with him so motivated.

(Forgive me if I miss people - I am trying to remember just the original or charter members.) Paula (lil),Jaye, Greg and AJ, harley,tena (lavenderlou), ronhuton and (I think) Carolyn & indigogo (carey) were in the old Braintalk and still post here. pwinkle - the creative one who opened her home in Kentucky to so many times for PLWP. Toadie from New York posted such thought-provoking topics, Chris Oshcosch (?sp) from Canada, Patti from KY, and others. Where are they now - what are they doing besides advancing with their PD?

One thing I want all of you to know is this: no matter what your problem, I am still in the business of helping othes - you can contact me any time. Use t he personal message feature here, and I will respond. Hugs and prayers to all
Peg

[paula_w]

Boxes can cause all kinds of problems. They define the limits of what is real for you. Nowadays, whether we like it or not, we are all trapped in a box where wealth rules; money is king. How are we doing? Not so good - I want out of the box. Thanks for an excellent illustration lindy.

Peg there were others but you've mentioned many of them. I remember puff, chy, mw, and the Canadian couple who both had the exact same first and last name after they were married...lol


paula

[lindylanka]

Mid-autumn 2001 I had the first intimations that I might have PD, which I knew nothing about at all, and I started to move between the fibro forum (where I had been for a while) and the PD forum on Braintalk. When my tentative dx eventually came in 2003 there were supportive people who helped me understand what I was experiencing, not just in terms of my condition, but the medical and social responses to PD. But most of all I found an incredible group of people with big intellects, a passion for learning more about PD and doing something for the PD community. One of you, I dont remember now who it was passed on a great bit of advice, that is, 'have a good attitude to your PD'.......what a bit of wisdom! I pootled between Braintalk and PWLP, and lots of names became familiar, though I was not much of a contributor, I was in fact a bit in awe of the PD activists on the other side of the pond. Someone who I remember well from her frequent posts was Janet, who had 'rigidity-dominant' PD, and who I identified with some, as I did not have any tremor, and who documented that type of PD so well. I often wonder what happened to her and the other 'names' who went off the radar, many of them when Braintalk fell in the second big crash. For all of you, those people who contribute so much, do and did so much, and were and still are so wonderfully active and vocal, despite all that PD brings, I give thanks.........as I think the many thousands who came, learned and were able to get on with the business of living with PD would wish to do....... the lurkers, the rare posters, the quiet ones from around the globe, looking for answers the medical profession could not or would not give..........

I do not remember those active posters as passive voices.............they were full of wit, wisdom, energy, and a will to change things......