let's face it...

[ol'cs]

Chemicals, even very large ones, don't do much for PD. They have been known to knock down (sometimes knock out) a few cancer metasteses, but for the most part, chemicals just "help" us PWP. Now if you are a "beginner PWP" they can help a lot. However time goes by, and tomorrow is never static with today. Everything has this nasty habit of changing, and no matter what we wish for, we all come to the same end. Medicine exists so that some people who should perhaps not come ot this end so soon, will be "saved", but eventually we are all just stardust, recycled in an open/closed system.
So, our tears are salty water from the sea, our thoughts are those of God, our bodies are impermanent houses from which we peer outward and inward. Who, what can truly "save us". Nothing. So don't be sad, don't be angry, your pain is felt by all of us, and as we reach out towards each other for answers, just think that someday soon, there will be no more pain, no more sorrow, no more need for questions or answers.
It would be nice if we at least knew that we would be in some way rewarded for leading a good life, for not fighting , for not killing, for not cheatiing, stealing, lying, etc; but instead known for loving, for smiling, for hoping, giving, helping, caring, etc.
Maybe having a bad disease makes us think this way, the "better" way. maybe having constant pain makes us think of others who have life even worse than we do, makes us able to contemplate how bad life can get, makes us able to want to help instead of compete with and destroy others.
But it makes us selfish too; not selfish for commodities that enrich financiallly, but commodities like the best researchers, the most able minds among us, ot work on fixing our particular worst problems. But i'm afraid that it's slow going, and there simply aren't enough "cures" to go around. Most of us will simply be forced to come to that conclusion. I am now certain that i will not last much longer than a few whining, stubborn, kicking and screaming years to my personal gallows, with no "cure" so that i may die with dignity. Many of you probably think the same way. Lets hope for a better future for all of humankind, and that the things that really matter for the continuance of our species, will continue. We don't want all of us to come to never see a blue sky, a sunset, or to experience all that we have in our short time on this planet. Maybe a "cure" for many things much more important for humankind than our personal "ultra important, cure PD" for us , will be part of future times. So, my friends, maybe there will be some afterlife for all of us. Some time -space where our spirits exist, and nothing "tragic" can ever befall us. This, I personally hope for, much more than a cure for what ails my earthly form. So, have courage that the reasons for our suffering will be revealed to us all someday, and that being a "good" person" really matters. That's all that i "hope for" now (along with a few "selfish things"; come on, i'm still alive after all:D). What do hope for , more than even your own personal life?

[reverett123]

These are deep waters which we cannot cross prematurely but which we are hardwired to try to see across. A few things that give me comfort

1- The near death experience phenomenon. People who "die" and are resucitated report strikingly similar experiences including a loving welcome. Folk wisdom from times when people actually died with loved ones present reported similar things.

Now, I know the arguments that "science" uses to keep this overturner of apple carts on the margn - oxygen loss to the brain, shock, endorphins, etc. But somehow they miss the mark and sound more like desperation than science. So, I ask-

The NDE is widespread and shares common traits across cultures. One of the most common features is a sense of calm acceptance of death and the the presence of a loving being. This is so widespread as to be either "real" or to be an artifact of human biology.

It is not a result of changes due to trauma or the approach of death. Heck,people get torn into little pieces without experiencing it. Or at least without returning to report it. So it takes more than trauma. And if it were simply a last burst of neuronal fireworks, then it would be even more rare since that would imply that a one-way threshold has been crossed.

Now all this can be bandied about and "hard science" can smile kindly upon our poor selves. But science is just fooling itself until it answers the following question-

As a Darwinian, how do you select for a trait that a) only manifests at death and therefore is not reproduced and b) results in acceptance of death and cessation of struggle to survive?

I am a Darwinian and believe the Universe is bound by the rules that science seeks to uncover. he answer that I keep coming up with is that whatever the NDE is, it is not an irrelevant artifact of our biology. And that just leaves "real". And that changes everything.

2- There is a book called "The Physics of Immortality" by Frank Tipler that I actually read. Anyone who has attempted to do so understands that that is no simple statement. :D Talk about a hard read!!! And while I don't fully buy in to all his conclusions, there are several points worth contemplating.

a) There is one heck of a lot of time left in the Universe. Billions of times more than what has past.
b) A lot can happen in that much time.
c) The laws of thermodynamics say that everything runs down and fizzles out, but those laws have no place in the equation for Mind.
d) All the vectors suggest that "c" is an important oversight. :D And that "Mind" is the manifestation of an inherent self-organizing principle at the core of the Universe.
e) This self-organizing principle is as much a part of the laws of science as gravity and leads to certain conclusions. One of those is that It wants it all! That is, in order to reach a stable "resting state" every song must be sung and every picture painted and every life lived and it must all be made apart of the whole.
f) As the complexity of Mind grows, a point will be reached when both time and space are transcended. Mind will be/is everywhere and everywhen. It has already happened but our awareness in this state of being can't take it in and survive. Life is a filter, like Cosmic Sunglasses :D
g) Lordy, how did I ever wander off into this....? :D

I will exit with the old joke-

The Scientist had spent his life climbing the Mountain of Knowledge and was pulling himself up the final cliff. As he reached up and grasped the last ledge above his head he heard the sounds of laughter and music. Drawing himself up the final inches he came face to face with a smiling little old man who quickly took his arm and helped him up, where he saw a group of very odd mystics, shamans, artists, and quantum physicists who seemed very happy to see him.

"At last! You have come! What took you so long?" :D

[CTenaLouise]

I believe there are cures - but not actually drugs as cures,
medicine doesnt cure - and it should not harm -yet it does,
nutrtion would be great if it was able to be fortifide and organically grown,
and meat was without growth hormones not so that the cow will get full price at market, - so it will make our children heathy!
I believe there is a way to health, that will seem like foolishness to some
yet - I still believe in miracles - events that are truly unexpected,
but can and will happen for those who wait on them - and by waiting I do not mean sitting still - I want us all to look at our diets - what do we'eat - when do our meds go off / we are the only ones who truly know this
malfunction in our body , and how we feel day to day -
so study yourselves on a day to day basis:
and who knows the part of the puzzle we may have solved for - ourselves... an perhaps many! :)

__________--
http://www.enzymestuff.com/discussionimmunesystem.htm


Intestinal absorption of undegraded proteins in men:
presence of bromelain in plasma after oral intake.

Castell JV, Friedrich G, Kuhn CS, Poppe GE. Unidad de Hepatologia Experimental, Hospital Universitario La Fe, Valencia, Spain. Am J Physiol. 1997 Jul;273(1 Pt 1):G139-46. PMID: 9252520 [PubMed - indexed for MEDLINE]

The human adult intestinal epithelium has traditionally been described as nonpermeable to proteins. However, indirect evidence suggests that reduced absorption of undegraded proteins might take place under physiological conditions. Using bromelain (an enzyme obtained from pineapple stems) as a model protein, we studied the extent of this mucosal permeation in 19 healthy men. The protein was detected in plasma by immunoassay and by its proteolytic activity after oral administration. The estimated plasma half-life was 6-9 h. After oral multidosing (3 g/day), plasma concentration reached as much as 5,000 pg/ml by 48 h. From the plasma concentration curve, it could be estimated that an average of 10.8 micrograms of bromelain was present in plasma in the 3- to 51-h period. The presence of undegraded bromelain in plasma was shown unequivocally by immunoprecipitation of plasma samples with antibromelain antibodies, followed by gel electrophoresis and immunodetection. Moreover, the enzyme retained its biological activity, at least in part. Circulating bromelain was found associated with alpha 2-macroglobulin and alpha 1-antichymotrypain. The results of this work confirm the existence of a small but significant intestinal transport of undegraded proteins in healthy men.

[reverett123]

I wonder what this means in the mucuna question. After all, the ground bean has a lot of proteins. It could be bad in that some proteins can make you ill. It could be good and explain why it might outperform sinemet.


I believe there are cures - but not actually drugs as cures,
medicine doesnt cure - and it should not harm -yet it does,
nutrtion would be great if it was able to be fortifide and organically grown,
and meat was without growth hormones not so that the cow will get full price at market, - so it will make our children heathy!
I believe there is a way to health, that will seem like foolishness to some
yet - I still believe in miracles - events that are truly unexpected,
but can and will happen for those who wait on them - and by waiting I do not mean sitting still - I want us all to look at our diets - what do we'eat - when do our meds go off / we are the only ones who truly know this
malfunction in our body , and how we feel day to day -
so study yourselves on a day to day basis:
and who knows the part of the puzzle we may have solved for - ourselves... an perhaps many! :)

__________--
http://www.enzymestuff.com/discussionimmunesystem.htm


Intestinal absorption of undegraded proteins in men:
presence of bromelain in plasma after oral intake.

Castell JV, Friedrich G, Kuhn CS, Poppe GE. Unidad de Hepatologia Experimental, Hospital Universitario La Fe, Valencia, Spain. Am J Physiol. 1997 Jul;273(1 Pt 1):G139-46. PMID: 9252520 [PubMed - indexed for MEDLINE]

The human adult intestinal epithelium has traditionally been described as nonpermeable to proteins. However, indirect evidence suggests that reduced absorption of undegraded proteins might take place under physiological conditions. Using bromelain (an enzyme obtained from pineapple stems) as a model protein, we studied the extent of this mucosal permeation in 19 healthy men. The protein was detected in plasma by immunoassay and by its proteolytic activity after oral administration. The estimated plasma half-life was 6-9 h. After oral multidosing (3 g/day), plasma concentration reached as much as 5,000 pg/ml by 48 h. From the plasma concentration curve, it could be estimated that an average of 10.8 micrograms of bromelain was present in plasma in the 3- to 51-h period. The presence of undegraded bromelain in plasma was shown unequivocally by immunoprecipitation of plasma samples with antibromelain antibodies, followed by gel electrophoresis and immunodetection. Moreover, the enzyme retained its biological activity, at least in part. Circulating bromelain was found associated with alpha 2-macroglobulin and alpha 1-antichymotrypain. The results of this work confirm the existence of a small but significant intestinal transport of undegraded proteins in healthy men.

[grant r]

What do hope for , more than even your own personal life?

Very touching, ol'cs... I am searching for a word that means sad and happy... bittersweet is all I could think of, there's got to be another.

Well, Bert, I mean Mr. Parks, I hope for a time when people are able to be more caring for their fellows. Seriously, it seems that as my time has passed, this ideal has gone further from, and not closer to, realization (just watch the way people drive ;)). And really, is it all that hard to show a little bit of care and respect day to day? Though it may seem like a small thing, it isn't, and I think it will ultimately determine the chances of our survival. It's (sadly) funny to me to watch people line up behind messages of hope and change only to continue their stampede for money (big business) and material goods (little people) over anyone in the way. I hope that the trend can be reversed by/for our children, but I shudder to hear some of what they listen to in the media, and I'M REALLY NOT THAT OLD. I've come to want not much more from life right now than an artfully prepared meal, artful music or drama, and friendly people wherever I am... MAYBE I AM THAT OLD. Anyway, I still keep hope for a just and joyous community built on the value of people, and I'm happy to see the thoughtfulness and hope in posts like yours.

To the enjoyment of many good and meaningful times ahead for you,

Grant

[MKane]

I'm at the point where I wonder how much more I can lose. PD has taken everthing from me. I am very grateful for having had some dreams come true. I loved and was loved by a wondeful man. The PD sent him away. I fulfilled a lifelong dream of owning Arabian horses. They are soon leaving too because of the PD. I've met some wionderful people who have done incredible things for me. I've learned a great deal about relationships and family. Now, as I get worse daily, I wonder how it will end. As an active animal rescuer and founder of a successful rescue, I would not put an animal through this agony. Alas, people do not have the benefit of hunane euthanisa. I don't care about eternal life or heaven or hell. Hell is right here and now.

[grant r]

I'm at the point where I wonder how much more I can lose. PD has taken everthing from me. I am very grateful for having had some dreams come true. I loved and was loved by a wondeful man. The PD sent him away. I fulfilled a lifelong dream of owning Arabian horses. They are soon leaving too because of the PD. I've met some wionderful people who have done incredible things for me. I've learned a great deal about relationships and family. Now, as I get worse daily, I wonder how it will end. As an active animal rescuer and founder of a successful rescue, I would not put an animal through this agony. Alas, people do not have the benefit of hunane euthanisa. I don't care about eternal life or heaven or hell. Hell is right here and now.


The concept of hope is riveting to me right now and I have been watching this thread today to see what people come up with. I have read your story in a previous post, and, if it means anything, I am very sorry to read of your increasing pain. The gravity of your post makes me feel that my previous post may have been less serious than it should have been, even though I was sincere about caring. I am at the beginning of this, and thus I am able to have the hope that something big can happen, and that I will see benefit. I cannot yet comprehend the loss you are describing, and I feel a little embarrassed for my glibness. Your point regarding Hell is not lost on me - may you find something to sustain you.

hopeful for you,

Grant

[paula_w]

This is my third post, lost the first two...cs thank you for starting a thread where we can be honest and express ourselves. I don't advise any pollyannas to enter with lectures about hope.
In the very first book I read about pD, don't even remember who wrote it or what it was called - I just picked it among several at the library - the author said, " I wouldn't expect a cure".

That certainly didn't deter me. But hindsight is always 20/20, and now I don't expect a cure. GDNF and Amgen are like Richard Nixon and Watergate. They got caught screwing up badly at all levels. PD organizations are not all on the up and up either. There is a ton of money being wasted on travel. Patients should be the ones representing themselves. Money always talks.

Patients are patronized and used....by everyone.

It's business, reputation, and agendas. I'm disappointed that not a one of them realizes they do not have the whole picture and never will. it's all a poker game.
Just facing it.

paula

[jcitron]

I too am at the beginning of this long road we call life with PD. I am lucky I suppose that I still have the honeymoon effect in place and hopefully for a while longer. Maybe there will be a cure someday in my lifetime, or perhaps I could be a guinea pig that could help others in the future.

Ol'cs.... I don't think you'll be leaving us too soon. You still have some fight in you yet so don't give up on us. We need you here. :) ;)

What you've said is very true, and after facing this along with a thyroid tumor (lost 1/2 of my thyroid in 2003), I take life a little differently. I call this a rude awakening that shakes us from our stupor and forces us to look at life in a totally new perspective. I no longer get up and take a blue sky for granted. I look at the blue and marvel in the color. I watch the birds eat the seed and the deer eat the corn at the bird feeders. I look out at my beaver pond in the backyard and marvel at the different moods the water can take on. Did you know that water can be as black as a shiny glass table top even with a blue sky? It's fabulous how this little tiny body of water can have so many moods.

As I drive to work, I enjoy the scenary more. Hey the trees are budding now. It's spring finally around here! I can't say much about the smell of flowers anymore because my sense of smell has diminished some, but they sure look pretty. Now as spring is progressing, I'm waiting for the crocus and other bulbs to open including our tulips.

John

[lurkingforacure]

I couldn't resist jumping in here with Paula's reference to no cure (my login!) and pollyanna. Some may remember a recent post asking for opinions on whether there would be a cure for PD and if so, when. To me these discussions indicate a tsunami of frustration with the progress (or lack thereof) of any substantive improvement in either treatments or potential cures. I wish big pharma were motivated by other than $$$ and/or liability (also translating into $$$ ultimately), and that the research/grant funding process in the US was different, but it's not.

But so what? Assume the very absolute worst is true of Merck et al., then what? Does one just give up, and live with that mindset? Or, as I would like to believe, does the human spirit rise to the occasion we find ourselves in, and try to make the most of every day with what we have? I know how hard this can be to do, as I watch my poor husband every day battle the PD demon, and we are early into this chapter of our lives. But without some type of hope for something better, it seems like that's where the mind would go. So, as for hope...

I personally am placing a lot of faith in the fact that PD is worldwide and is set to become one of, if not the, single most focused-upon diseases of the globe (next to AIDS and other politically popular ones)-not that this is good, for I feel terrible for anyone afflicted with this plague-but because governments of every country will be FORCED to seriously fund and try to cure a disease that renders a significant portion of its income-earning citizenry disabled AND has staggering costs of care for those elderly who are already retired. To wit, countries like India, China, even here in the US where there is no shortage of regular articles about baby boomers placing a huge burden on and possibly bankrupting the already stretched-to-the-gills social security, medicare, and medicaide programs when they retire. What all would a country be willing to do to stave off that looming and, in my opinion, inevitable, financial disaster? The alternative is a nonsustainable situation, hey, kind of like what we already have! But this would be much worse.

Also, I have read several articles within the last six months from scientists at various institutions saying they believe a cure is close, within our lifetime, within a decade, one guy even used the words "without our reach". Sure, they want continued funding. Sure, they want name recognition, prestige, and career building fodder. But I really do not believe that ALL of these researchers are simply churning to earn, and that not one of them is burning wiht the desire to be "THE ONE" who solved the puzzle. Think of the $$$ THAT would bring, not to mention prestige, honors, and warm fuzzies.

I hope these thoughts help some feel a bit better.













This is my third post, lost the first two...cs thank you for starting a thread where we can be honest and express ourselves. I don't advise any pollyannas to enter with lectures about hope.
In the very first book I read about pD, don't even remember who wrote it or what it was called - I just picked it among several at the library - the author said, " I wouldn't expect a cure".

That certainly didn't deter me. But hindsight is always 20/20, and now I don't expect a cure. GDNF and Amgen are like Richard Nixon and Watergate. They got caught screwing up badly at all levels. PD organizations are not all on the up and up either. There is a ton of money being wasted on travel. Patients should be the ones representing themselves. Money always talks.

Patients are patronized and used....by everyone.

It's business, reputation, and agendas. I'm disappointed that not a one of them realizes they do not have the whole picture and never will. it's all a poker game.
Just facing it.

paula

[paula_w]

I'm still reading and am so glad to have responses...truly. Reading my first book didn't deter me either. There is always reason to hope. This isn't a roll of the dice and see who wins tho.. There are good scientists out there, but funding them is like trying to cross a mountain range and they get swallowed up. And we are the peons. Well no we aren't....wait yes we are because a decade long group of fighters are getting too adv to continue and no one here looks like they would take anyone's place.....not that I can see any of you lol.

You have to fight - orgs and medicine. The government and bio industry? Them too.

I'm ready to look at the flowers, walk on the beach, take my grandson to soccer. Now looking back, i see myself, trying so hard to establish trust in the community through various transparent projects. I wish people would join us where we are at....skip the self proving...we need teams.

zzz time for a movie. I was going to clean because Jaye is coming to visit tomorrow. Well maybe I will - where's the IPOD?

Then there are the neuropsychiatric symptoms of adv pd....another thread.

paula

[Jaye]

Disney's 1960 version starred Hayley Mills. Apparently Pollyanna ran all over the place cheering people up, until she was hit by a car and lost the use of her legs. I presume she couldn't even walk backward at breakneck speed, as I do when Forward doesn't work. All the residents of her town came over and tried to return the wonderful good feelings she had given them (fat chance, lean on your fellow parkies or watch Hell freeze over, with the exception of a few special care partners--I hate the term caretaker, by the way; it makes me feel like I'm in a zoo, or that I'm somehow a country estate in Europe), but loss of mobility was more than she could bear. It was not until she was mysteriously CURED off camera that she could be happy again. Is anyone's heart warmed by this?

Earlier this year I heard a sermon in which the speaker analyzed Jesus' actions in a certain passage to depict the stages of spiritual development, beginning with physical infirmity. First, he said, we have to be cured of our physical infirmities, and then we can move on to other stages. i wasn't too clear on which passage he was referring to (maybe one of the Pollyanna books?), but I looked around the room and I was the only one awake, so I refrained from making trouble. Fortunately, that congregation has taken major steps recently to set up a system to visit the chronically ill and disabled. Hmm, maybe I mentioned one or two points to them.

I don't like the Pollyanna attitude of excessive and phony cheer calculated to shame others for feeling their misery. I don't mind blowing off steam (as Paula can attest) or listening to others when they need to. I look at this life as a vale of tears and at the same time a place full of joy, there for the grabbing. Having PD is a good way to get free of the illusion that life is fair, that one is better than anyone else, and to learn to live on a different, spiritual plane, at least some of the time. There are a thousand paths to that plane, some of them not even termed spiritual. Thanks to cs for sharing a bit of his with us and for inspiring those that joined in--thanks to all of you, too.

I can't wait to get to Paula's. I can really be myself there. Of course, if she acts up at all, I might threaten to be SWEET and CHEERFUL for a couple of days.... only joking !

Jaye :D

[Howardh]

club or Pollyanna,s, as Americans tend to label them. People who no doubt give us some hope that a cure is nigh. How do we define a Pollyanna? is she/he an Andy Grove type who invests $40million into valued research, and lectures science on change is neccessary if we are to secure a result beyond 40 year old sinemet? Is she/he a MJ Fox who fronts before congressional hearings asking for Embryonics to be recognised. Is she/he a Dr Matt Durring who is advancing his course of gene therapy via his company Nurologixs, or is it indeed those of you who front Parkinson Institutes to advance new knowledge and skills, that may give the down trodden and depressed me me me inspiration to kick in for another day or three. If the answer is yes to the above then lets join and encourage these ra ra types to get more ra in their ra ra. Somebody here mentioned there were 42 research programs being initiated across the U.S. and the planet as we shake, freeze and roll, our way to doom and gloom. Are we to morph these individuals into the dreaded Polly club:D never to indulge in intelectual debate forever more? Or is it just a load of old BS controlled by the big Pharma companies who want the status quo to remain. Anybody?

Ol'Ce.... You're a legnd mate i enjoy everything you put pen to paper to, specially the science thread you generated. Blew me away.

[paula_w]

A Pollyanna, to me, is not what you describe, Howard. By Pollyanna, I meant someone who would scold me for being negative; who can''t resist telling people to cheer up. It's not wrong to cheer people up - but this thread was a vent. That's all, nothing complcated.

May the Ra Ra Group live long and prosper.:winky:

paula

[Fiona]

Well, I hesitate to jump in because part of me finds some of the above posts almost on the pejorative side, and kind of - welll, name-calling, I guess is what I could call it... If to some I have been guilty of "excessive cheer", I certainly hope it hasn't included being insulting and if anyone has felt that, I am most apologetic.

Of course I'm stating the obvious when I say that this condition is an enormously difficult one to deal with. My friend with HIV/AIDS told me that compared to me, he was taking a walk in the park. In many ways PD seems to be about a crisis of the very substance of life itself, movement, and the compromise of that element feels terrifyingly like death. SO I think it is a profound and existential kind of illness, and that dealing with it is hence profoundly challenging.

Having had it for 20 years or so now, I certainly have gone through many things... am no stranger to the increasing poverty, increased isolation, the feeling of being slammed in the face every time you muster your positive energy to try one more approach, one more day of trying to keep a stiff upper lip. And I know well, too, how not only do we have to do this for ourselves, hard enough, but we have to prop up everyone else around us who is even more freaked out than we are about the whole thing because it seems so alien to them. And I read people's accounts of despair here, and talk with my PD acquaintances who routinely discuss their plans for suicide...it's an awful thing to have to deal with, and nobody who doesn't feel it in their bodies really knows what it's like...

Still I think there are many different relationships people have between themselves and this disease. And disease in general. And many different things it can mean to them, and approaches to be taken...some of us are way into the precision of chemistry and discovering the exact scientific triggers beyond what the totally manipulated medical community has "found out,"; others are really into working within the mainstream system, and sharing how it can best work for them. Others are off on whole other alternative tangents with varying degress of whackiness. But I say more power to all of us, we all have a role to play, and if one orientation doesn't strike a bell with you, then try another. But I for one will not be intimidated into not expressing hope if that's what I have to offer. I work very hard to construct that hope. That doesn't make it phony. And I know how depressing this disease can be, and I don't blame people for feeling like they have to vent sometimes. But lay off with the "no Pollyanna's here" - it's disrespectful and rude.

I don't blame anyone for struggling with despair. Many nights I stay up praying for the struggling individual voices I hear on this board. It takes everything I have to construct my ongoing reality, but I'm proud of that, and I only offer it in hopes that any victories that I have might encourage someone else, not to make them feel bad about it.

The way I deal with this whole thing existentially right now, is that I firmly, believe, for myself, that I have some kind of mission to figure how to deal with this thing without the products of the big Pharma companies. As the days go by, and more and more news comes out about the mounting manipulations, outright fraud, profiteering, control of the scientific body of knowledge, and then the mounting interactions and side effects becoming an increasingly awful problem for our over -medicated society as a whole, I feel that with the time I have left I am going to do my damndest to figure out other ways to build health, other than being left to the claws of the pharmaceuticals...because I think that somewhere down the line, and pretty soon, like when they discover what the long-term effects of all the antidepressants are etc., many, many people are going to need some kind of encouragement and helpful experience about alternatives.

But there are many ways to deal with pain. I think of John Milton who wrote much of his most amazing work while suffering incredible pain, Saint Francis of Assisi who didn't want to be healed of his health problems so that people could see that one could still do good despite poor health, and many, many others... And as much as I feel like I'm fighting for my life everyday, there are others who are in worse pain or fear, and I find that even finding small ways to offer comfort takes me out of myself, and creates something that transcends my own pain. Many days I feel utterly inadequate to this task, but I refuse to give up on it.

But let me be clear: I don't say this to admonish anyone for anything else that they do (except name-calling!). I only offer it because that's what I have to give. Other people do very valuable things in their own ways - SteveM's beautiful weekly checkin - a simple thing, but how lovely and connecting that act is. And people that are overwhelmed and wracked with despair, you offer much too, to remind us of just how important compassion is, of how much we still need each other, to remind us that life is serious and precious, and that as best we can, we can't leave each other behind.

I don't understand fully why each or any of us has had to face this path in life, and as I said, I think it's a little different for all of us. And my prayer is that each of us can find a kernel of meaning in his/her own path that, while perhaps untranslatable now, will reveal its significance at the proper time.

I am stubborn and hopeful. For all of us. But not without looking at the face of despair fully in both eyes, and doing that continually as long as there is one person left suffering. I don't castigate anyone for that despair, and on my good days I have my stubborn fightin' side to offer on loan for anyone that wants to borrow some to make it to their own tomorrow.

[reverett123]

We have something which, in large part, is defined by our brain chemistry. Not just dopamine, but a veritable palette of color. Left to itself, our palette tends toward darkened earth tones when what we need is light.

Within limits, we can lighten that palette in various ways including such simplistic actions as keeping a positive outlook. It is trite and over done, but it does affect brain chemistry. None of us can pull it off 100% of the time but having the rest of us around in those times can help.

By the same token, sometimes we get the blues and we just want to hit a bar and get drunk.

"Whatever gets you through the night is alright..."

[Jaye]

I never answered your question, cs. What do I hope for?

I would like to be able to stay in my place of peace (the spiritual plane I referred to above) most of the time, up to all the time. Maybe if we can each learn to be wholly in our own peace place, then the death of the body will matter little, as you suggest. I would like to continue to explore the depths and heights of such mysteries with people who want to add my experience to their own, so we learn together.

This means that I don't fight my PD, I take care of it. It is a part of me, or another way to say it is that having it is just how my life turned out. I have to continually learn what my limitations are as they change, and then apply some intelligence to selecting which limitations to accept, which to learn more about, which to live with, which to get treated.

I hope to continue to contribute to others' lives, to reveal truth for the sake of justice, to spread caring, and all that worthwhile stuff. I hope for human touch and powerful music that crescendos as I go out.

See you there. :D
Jaye

[paula_w]

People are always coming and going from different places. They are also interpreting what they read in different ways. I am going through a rather significant acceptance of life as it is, which is not the same as giving up. The title of the thread is' let's face it,'and i am facing some personal demons and realizations after coming back from a neurological conference where some of the abstracts left me scratching my head at why money would be spent on that. It was very disturbing.

Howard, actually, the original Pollyanna came from the novel, as Jaye mentioned , Pollyanna, whose success brought the word into the language to mean a "person who always maintains a generous attitude toward the motives of others." It became by extension a derogatory term for a naive optimist who always expects people to act decently, depite strong evidence to the contrary."

paula

[Howardh]

for clearing that up Paula. I am not familiar iwth a lot of U.S. slang. It sounds like a pollyanna type ism trapped between a rock and a hard place....damned if you do damned if you don't....cheer people up.

A Pollyanna, to me, is not what you describe, Howard. By Pollyanna, I meant someone who would scold me for being negative; who can''t resist telling people to cheer up. It's not wrong to cheer people up - but this thread was a vent. That's all, nothing complicated.

May the Ra Ra Group live long and prosper.:winky:

paula

[Fiona]

:) :grouphug:

[MKane]

For a very long time I must have been a Pollyanna. I felt that attitude was everything, Still do in some circumstances. Now, as I'm nearing the end, I'm not depressed. I'm just really PISSED OFF. Angry at the medical profession, angry at the drugs companies, angry at politicians. Just plain Angry.

[Judith]

Paula says, “I don’t advise any Pollyannas to enter with lectures about hope.” I’ve been dismissed previously from conversations on this forum as a Pollyanna. It was never my intent to tell people to cheer up or to scold anyone for being negative, but instead to say what has worked for me if that was the topic of the thread. Evidently some reading my messages have felt scolded. Actually, I have felt so scolded for being positive that I don’t post here very often. But that is not what I am writing about in this message. CS asks, “What do you hope for, more than even your own personal life?”

As a leader of a PD support group, I have watched as three of my friends have died from this disease (that we supposedly don’t die from), as others have lost their ability to talk, walk, or care for themselves in the most basic ways. I have seen vibrant and energetic people become frightened and anxious and despondent. I have seen spouses and life partners become overwhelmed, burned out, and used up.

This thread stimulated some lengthy conversation over the breakfast table. And we concluded that it feels outrageous to have hope (belief that something good will happen) under some circumstances. For some, hope is “I hope I make it through the day.” Lots of people are so incredibly busy trying to survive, groping their way through the day, that they put hope on the shelf. For others, hope is that DBS or a new medication will return some former level of functioning. I am one of the lucky ones with slow progression, partly due to the brand of PD I got and partly because of hard work and religious adherence to taking my meds precisely on time. And so, I have the luxury of being able to hope in both my personal life (that my life can still be productive in some way) and to hope beyond the daily coping for something more.

My hope for myself and for all of my PD friends is that we will find some peace and acceptance, even for those of us who are experiencing hell on earth. By acceptance I don’t mean giving up and giving in to PD, but instead putting aside anger and upset feelings, because those can tear you up and make symptoms worse. I also hope that for those things we have lost, we can find a new way of seeing. That doesn’t mean lying—for example, saying something is red when it’s blue, or that all is well when it’s not. It means challenging expectations about what we are capable of doing and replacing losses with something else.

J-

[Fiona]

Thought I'd mouthed off plenty yesterday, but these latest additions have me thinking even more. Yeah, I'm pissed off, too, increasingly....WAY pissed about the whole pharma system, etc.. But -and this is just me - I am trying to take that pissed-offness to energize me. And keep a sense of my own personal integrity, and no matter how much the rug gets pulled out from under me, I say you (Neupro patch people, Merck, doctors on the take, pesticide makers, my own genetic history, etc. etc. etc.) are not going to get the final say about my life, the core of my life energy - my will and spirit. And I'm going to do a furious stamping flamenco dance whenever I can, in an ode to my precious life.

I know how crazy this sounds: I think the world is in - and is headed for -some very troubling times. I think that some very spiritual warriors are going to be needed who have experience in reigniting the very essence of the body and soul's life force. I believe that many of us PWP have been chosen because we ARE strong somehow, and that our training is very rigorous and dark because that's what we need in order to help the others later. I know this sounds like a parody of Dungeons and Dragons or what-have-you. But that's how I have created meaning for myself. So if you can't relate, I hope it's least worth a good laff. :D But this is how I endure.....

[Jaye]

Let me tell you a story. I think Paula's remark refers to an earlier time, when I was posting a regular "up close and personal" thread. One week I called it "The Wailing Wall," knowing full well that there is a wall in Jerusalem called that, a remnant of the great temple that once stood there, where people go to pray and to mourn the loss of the temple. Perhaps it was too subtle, but there was a parallel to the temple of our bodies and the ruin we were witnessing in our own flesh. According to my neuropsychiatrist (and, more recently, my neuropsychologist), it's healthy to mourn our losses occasionally, so every few months I would welcome forum members to share their griefs and losses if they wanted to, and I included a request that those who didn't want to read sad thoughts just refrain from going further (as I recall my motives).

It turned out to be a great thread, but some couldn't resist, or skimmed my opening post without catching the idea that it was just one thread, and scolded the mourners for feeling the way they did. Insisting that others be positive all the time (remember we're talking about a historic thread) was just plain unrealistic, and not respectful of the bared souls of others. In addition, I was scolded for my disrespect in calling it the Wailing Wall by one member, while another member had been to the Wall and thanked me for bringing it up.

It seems that "Pollyanna" is a cultural trigger that evokes widely varying memories in each of us. I have been called a Pollyanna myself, and I rejoice that I can still smile so much of the time.

Jaye

Just saw last two posts:
Judith, see above please.
Fiona, I don't think your spiritual warrior idea is crazy.

[Judith]

every few months I would welcome forum members to share their griefs and losses if they wanted to, and I included a request that those who didn't want to read sad thoughts just refrain from going further (as I recall my motives)..


Jaye, I remember those posts. Perhaps I am guilty as charged, but I believe I refrained from posting on those particular threads. I had been put down other times for postings about optimism and when I described some of the things on my web site, they were dismissed as psychobabble. The one time I felt most scolded personally was in a thread about "what works for you," sort of--how do you get through the day. I included a positive attitude as something helpful to me and added that the people I knew who seemed best able to cope with PD were the ones with a positive attitude. I was roundly scolded as unrealistic and was very pointedly labeled a Pollyanna. I felt belittled and misunderstood. So I prefaced my response on this thread with my feelings about Paula's Pollyanna remark and an explanation of why I don't post often.

I heeded Paula's warning, but it still felt like I was taking a big chance by responding to this thread and talking about my hopes. It's unfortunate that one has to be careful not to be too positive--even when the topic is a positive one such as hope. We all are dealing with a difficult disease and we all are experiencing loss. It would be nice if we could be supportive of people who are trying to be positive.

As for the Wailing Wall--I have nothing against venting or mourning, and I appreciate that you defended Paula's remarks. I do understand that she has felt scolded in the past. The fact remains, that so do I.

J

[Jaye]

I'm afraid I have to say that I don't see where anyone in this thread is trying to undermine positive people. Paula has clarified her motives (since you named her), and I have attempted to widen the lens. We could wander back to cs's topic for a while. Something must have hurt you deeply, Judith. I hope you will PM me, especially if you think I was responsible for saying something harsh.

Jaye

[Judith]

Jaye,

Sorry to belabor the point... perhaps I have made too much of it. I didn't say that anyone in THIS thread was undermining positive people, but I did I take the warning to Pollyannas personally because I was given that label and attacked in the past. Let's get back to our hopes.

Judith