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

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. 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. 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
g) Lordy, how did I ever wander off into this....?

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?"

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.

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.

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

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

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

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.

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