[paula_w]

My answer to that question is not likely. Michael 7733, one of the first patient from braintalk to theorize the whole pd pathway thing, said when I asked him about his theory for the book, it all boils down to water and electricity. He thought for awhile that blue-green algae could help. Michael also considered pd to be a disease of the mitochondria. That was almost a decade ago.

We’re trying to pull together the final version of the book and, naturally we want to end it with hope for the future. The rest is my opinion which I would be glad if it were proven to be wrong.

I don’t think any chemical is going to fix us. I think our bodies are going to have to adapt to what is put into us to survive. Life expectancy has lengthened but at what cost. People are suffering, their children have to pay for it because we don’t have enough money to outlast us.

So what am I saying. I think I’m saying we are not going to beat this disease. Not ever. Our bodies, are going to have to evolve. The industrial age brought about black grit on our windowsills when I grew up a couple of hills away from the steel mills and railroads that ran all the way to Pittsburgh from my town,…over 30 miles and beyond. Then there were the coal mines.

My mother cleaned the house every weekend including all the baseboards and behind every inch of furniture because of the gritty dust in the house.

Altho nuclear power isn’t a big threat as energy, someone is going to blow something up with it and oil has sparked more greed globally than pharmaceuticals.

They are never going to collaborate. Cere 120 is a teachable trial but it isn’t going to cure us. GDNF might do better. But instead of throwing all their money together and really brainstorm the different delivery systems they are competing and duplicating and pulling the drugs just when people start to feel better.

I don’t want to discourage patients but we have to face the facts.

Nanotechnology could be an answer. But were we really put on this earth to become robots? I don’t know how I feel about the future wth all the nanotechnology. It could be good for awhile but as we do with everything we get our hands on . greed and excess of the rich will make it obscene.

Not a very positive post. But an honest one.

So what are your ideas. Prove ,me wrong and I’ll be grateful to you.

Mike Fox says don’t go there and I agree with him to a point. But he isn’t going to put anyone in the poorhouse.

Any positive thoughts about this? My hope stems from my Christian faith. What am I missing? I think it’s realistic to keep studying and sharing information _ I will not stop doing that. But I’m worried about the burden I may become. Caring for pwp is relatively new. Just yesterday a lady at the health club said her mother –in-law and many others didn’t have med and were put in and I quote “insane asylums.”

[paula_w]

1. The Industrial Revolution and its consequences have been a disaster for the human race. They have greatly increased the life-expectancy of those of us who live in “advanced” countries, but they have destabilized society, have made life unfulfilling, have subjected human beings to indignities, have led to widespread psychological suffering (in the Third World to physical suffering as well) and have inflicted severe damage on the natural world. The continued development of technology will worsen the situation. It will certainly subject human beings to greater indignities and inflict greater damage on the natural world, it will probably lead to greater social disruption and psychological suffering, and it may lead to increased physical suffering even in “advanced” countries.

2. The industrial-technological system may survive or it may break down. If it survives, it MAY eventually achieve a low level of physical and psychological suffering, but only after passing through a long and very painful period of adjustment and only at the cost of permanently reducing human beings and many other living organisms to engineered products and mere cogs in the social machine. Furthermore, if the system survives, the consequences will be inevitable: There is no way of reforming or modifying the system so as to prevent it from depriving people of dignity and autonomy.

3. If the system breaks down the consequences will still be very painful. But the bigger the system grows the more disastrous the results of its breakdown will be, so if it is to break down it had best break down sooner rather than later.


answer below rick.

[reverett123]

I that if someone like MJF would take a leadership role and organize the patients to conduct their own research that we might accomplish something. Consider Ron and curcumin fo a moment. What if there was an organized effort to sign up newly dx'd PWP. Explain to them that published research over the last 50 years has led to 25 promising treatments that isn't going to make anyone rich and therefore isn't going to attract funding. Here's the data on the 25. Pick one. Report how you are doing to this forum at least every six months. In return you get to know how everyone else is doing.

Suppose we had 1000 Rons taking curcumin. And suppose they had been taking it for the eight years. And suppose that every darned one of them were doing as good as he is.

We can't wait for them to save us.

[paula_w]

from The Unibomber's Manifesto

Originally published 1995. Published on KurzweilAI.net May 14, 2001.

adding part of the disclaimer at the site:
This manifesto, presented here in its entirety, ranges from articulate, intelligent psychosocial analysis and criticism to angry delusion.

http://www.kurzweilai.net/the-unabomber-s-manifesto

altho i deplore and condemn his actions; i understand a good number of his points.

[paula_w]

[quote=reverett123;772525]I that if someone like MJF would take a leadership role and organize the patients to conduct their own research that we might accomplish something. Consider Ron and curcumin fo a moment. What if there was an organized effort to sign up newly dx'd PWP. Explain to them that published research over the last 50 years has led to 25 promising treatments that isn't going to make anyone rich and therefore isn't going to attract funding. Here's the data on the 25. Pick one. Report how you are doing to this forum at least every six months. In return you get to know how everyone else is doing.

Suppose we had 1000 Rons taking curcumin. And suppose they had been taking it for the eight years. And suppose that every darned one of them were doing as good as he is.



We can't wait for them to save us.[/quote

we are trying to get this book published, online and translated globally. We have to work together and this book has potential for doing just that. I am calling for a revolution - just not a violent one!

[stevem53]

I went to a support group today, that I havent been to in about a year..I have gone through some progression during the past year, but I was really taken aback by the pd progression of some of the members of the group that I havent seen in a while..Some of them were dx at about the same time that I was, and some were dx after..However, all of the people, with the exception of one, who have had DBS, seemed to be about the same as they were the last time I saw them

I also took note of the unique differences in symptoms, from one pwp to another

What has this got to do with a life saving treatment?..Nothing really..It was just a reality check

I see people getting worse and worse, and I really noticed, and pondered about how this disease manifests itself so differently in other people..This isnt something that I/we didn't already know, but for some odd reason, it really hit me like a cold pail of water in the face today

With all the money that has been spent on research, and all the clinical trials and all the potential irons in the fire, it seems to me, we pwp are still at square one

[lurkingforacure]

Originally Posted by stevem53

I went to a support group today, that I havent been to in about a year..I have gone through some progression during the past year, but I was really taken aback by the pd progression of some of the members of the group that I havent seen in a while..Some of them were dx at about the same time that I was, and some were dx after..However, all of the people, with the exception of one, who have had DBS, seemed to be about the same as they were the last time I saw them

I also took note of the unique differences in symptoms, from one pwp to another

What has this got to do with a life saving treatment?..Nothing really..It was just a reality check

I see people getting worse and worse, and I really noticed, and pondered about how this disease manifests itself so differently in other people..This isnt something that I/we didn't already know, but for some odd reason, it really hit me like a cold pail of water in the face today

With all the money that has been spent on research, and all the clinical trials and all the potential irons in the fire, it seems to me, we pwp are still at square one

So if I read this right, you are saying those that had DBS were about the same as they were when you saw them a year ago (except for one)? Sounds like DBS is probably the best thing out there right now, huh? Too bad it's such a radical procedure, geesh.

[stevem53]

Originally Posted by lurkingforacure

So if I read this right, you are saying those that had DBS were about the same as they were when you saw them a year ago (except for one)? Sounds like DBS is probably the best thing out there right now, huh? Too bad it's such a radical procedure, geesh.

That seemed to be the general concensus..I was mortifed by the progression of some people who were doing well a year ago

There was one lady who had DBS done twice by two different Dr's, and she is worse now that she was to begin with, but all the other DBS-ers in the room seemed about the same as they were a year ago..There is one couple that come, and you cant tell which one has pd

Yes, too bad it is so radical..Everything seems to be a tradeoff

Sometimes I feel like the last piece on a chessboard, getting chased around the board, desperately trying to avoid getting checkmated

[reverett123]

If you are doing poorly you may seek such a group out of desperation. If you are doing well you may just go fishing.

Maybe we could devise a unit of measurement to track our change over time. We could call it the "Ron"

Originally Posted by stevem53

That seemed to be the general concensus..I was mortifed by the progression of some people who were doing well a year ago

There was one lady who had DBS done twice by two different Dr's, and she is worse now that she was to begin with, but all the other DBS-ers in the room seemed about the same as they were a year ago..There is one couple that come, and you cant tell which one has pd

Yes, too bad it is so radical..Everything seems to be a tradeoff

Sometimes I feel like the last piece on a chessboard, getting chased around the board, desperately trying to avoid getting checkmated

[budgies]

Originally Posted by reverett123

If you are doing poorly you may seek such a group out of desperation. If you are doing well you may just go fishing.

Maybe we could devise a unit of measurement to track our change over time. We could call it the "Ron"

It was very upsetting to read Stevem's description of how people had worsened in just a year, so thanks for your words Rick.

I'm hoping against hope that there are far more people with PD out there who are getting along reasonably OK.