Lately, I have been reading about a lot of research being done in an effort to find a cure or at least better medication for Parkinson’ Disease. The more I read and understand about stem cells, ZFP Therapeutic, and so on, the more I think they have gotten the cart ahead of the horse. Here we are 200+ years after naming this disease and are no closer to knowing what causes it than they were 200 years ago.

I’m not a medical researcher, doctor, or even an orderly in a hospital. My background is in engineering. I by all means do not want to take away from any of the research going on. It is important and may prove useful someday. There are some things I don’t understand about the current research being done. How can you cure or find better medication (fix) if you don’t know how or what is causing the problem? It seems to me that a major step in the troubleshooting procedure has been overlooked.

Here is what I mean. Let’s say you want to go out and start your car. This is something we are all familiar with. You get in and put the key in the ignition switch, turn it and the car usually starts. Why? Because if everything is working right, there is a sequence of things that have to happen for the engine to start. As you turn the key, electrical power from your battery is sent to the coil and starter. The starter turns the engine over to get the pistons moving into their compression stroke. Gas and air are supplied through the carburetor or fuel injection system. Due to the timing of the engine, a spark is sent from the coil to the spark plug at the correct moment. The gas ignites in the cylinder and drives the piston down for the exhaust stroke. If everything is working correctly your car starts. One little deviation from this sequence and the car will not start. You must find what is not working to fix the problem before the car will start.

I know my example is a very simple one but I think it gets my point across. I understand the brain and human body are far more complex than a car engine. However, the idea is the same. Identify the problem then fix it. Researchers and doctors openly admit they do not know the cause of PD. Then why do they think it can be cured or fixed without knowing the cause? I believe it is time to change directions.

While stem cells and gene therapy are fantastic cutting edge science, they are not providing the results required. This is what I believe needs to be done. Using a healthy body, they need to go back to the very basics of the human body and examine each and every system, process, function and sequence until it is fully understood how it works. Then take a body with PD and compare each item with the healthy body. When a problem is identified make the needed repair or correction and document it. They must find a cause before it can be fixed or cured.

That being said there are other questions to be answered. Why is my PD different than yours? Why do my medications work for me and not you? Why do I have tremor and you don’t? I believe if they can locate and identify a cause they will also be able to answer these questions.

This is only my opinion. Due to my limited knowledge of the human body and how it works I have more than likely over simplified what I think needs to be done. I would like to know what you think about where research is today. Are they on the right track?

GregD

Greg, I started reading everything I could find concerning Parkinson's disease in 1996. That was 3 years before I got my first computer. Since that time I have read probably over a thousand abstracts concernig Pd research, and I have formulated my opinion. Believe it or not, my opinion addresses every one of your questions and then some.

Two important things happened in the 1940's that would prove to greatly impact our diet and our health. Those two things were: 1)stockpiles of certain chemicals at the end of world war 2 and a move toward using additives in massive amounts to enhance agricultural soils and 2) the beginning of the acceptance of fast foods as a major part of our diet.

Resulting from these two actions were and are several other cascades of ongoing, progressive changes: 1)a slow decline in the vitamin/mineral content of agricultural soils. 2) a corresponding weakening of the immune systems of our crops leading to the need to use more and stronger pesticides and herbicides, leading to the manufacture of more potent synthetics.(use more-need more, use more-need more). 3) To a great degree, our present-day diet does not provide enough live enzymes or pro-biotics to sufficiently support our digestive systems. Even if we were capable of pulling every nutritious molecule out of the fast, overcooked, practically nutrient-stripped food that we eat, it would not be enough. Animal model studies indicate that this type of diet will eventually lead to sterility somewhere between the 7th and 10th generation. Illness is eminent.

Due to the depletion of vital nutrients being received by the plants, there was and is a corresponding depletion of vital nutrients reaching us, and a corresponding generational weakening of the human immune system has been and is ocurring. We, in turn, are also adding more and more chemicals to our bodies in the form of pharmaceuticals and synthetic vitamins, preservatives, artificial scents, etc. (use more-need more, use more-need more).

Each successive generation suffers more and more structural abuse due to the insufficient and sub-standard building blocks of our physical being ( I won't take time here to name the many vital nutrients). We are becoming houses built of straw instead of bricks, so to speak.

At the same time, insult has been added to injury by the bombardment of our bodies with man-made chemicals which our already weakened immune system cannot deal with or identify. The body attempts to eliminate what cannot be metabolized or further broken down and prepared for use by and for the body's billions of hungry and thirsty cells, but it is not always successful in its attempt. That which remains is stored or roams around inside of us looking for another substance to 'hook up' with ( a marriage and quick divorce so to speak). The damage is done, and the molecular molester moves on to destroy again. It might mimic an enzyme or break up an already existing union or cause damage or death some other invasive way( this is where i would discuss mitochondrial mahem, or respiratory interference, or energy drain or neurotransmitter displacement or some such event that would eventually lead to an untimely death of our cells).

As more and more cells die and more and more energetic pathways are blocked, and energy transfers are denied, corresponding mechanisms and interchanges are adversely affected. The cascade continues.

Vital checks and balances are no longer in play, and therefore certain lines of communications are no longer open or incorrect information is being received. The quantitative matrix that regulates and coordinates supply and demand is no longer coded properly ( we could discuss DNA and severed RNA, and genetic breakdown or mutation here).

Dis-ease begins to show up in our bodies in the form of symptoms that we group together and define as disease. Some have a group of symptoms that we have named ALS or MS or PD or PKU or PSP or MSA or some other grouping of convenient letters. Our symptoms are categorized, and we become a statistic.

In the meantime, back on the farm, we have allowed our chemicals to be washed from the farm and into the wild where the same scenario will occur among the populus of other species of plants and animals.

The web of life begins to unravel. Biodiversity is slowly destroyed ( several hundred species per year now)

This becomes our children's inheritance, and so the next generation adds to the injury, more insult.

Do you think we will become wise before we die, or do you think we will ignore the truth forever? To say we can do nothing is really to say,"WE CHOOSE TO DO NOTHING."

I have found 4 classes of chemicals, identified by their mode of action, which can cause Parkinson's symptoms. Each class affects a different area of our cellular makeup. This explains why we are symptomatically different and why we do not necessarily respond to the same therapy. Also, each of us who have Pd due to neurotoxicity, probably absorbed different amounts of the chemical. Those who absorbed the most would probably progress the fastest and those who absorbed the least would progress most slowly.

Therefore, I believe that each of us must identify our toxin and take measures toward removing it (them) from our body. Then we must provide our body with a proper diet that includes clean air, clean water, stress free surroundings, and we must exercise. The body should take care of the rest.

That's my opinion.

michael b.

Well you may not like my opinion but here it is anyway.

It really matters none to know what the cause is of most diseases. It is in the treatment of what is that matters,

While the cure lies in the long term plan it will be decades before it is found.

Releaving the symptoms because of the individuality of them is what I deem as important.

I don't think we can look to the past and see anything relative as to the cause of Parkinsons.

While all want a cure of course what you suggest of comparisons of a 'normal' person and a Parkinson patient is worthless and in the end result of no value.

Told you you wouldn't like it lol

While you are documenting the progressive down fall of humans (at least since the 1940's) life expectancy of those humans (at least in the US, Canada, Japan and western Europe) has increased markedly; in the US from 48.3 years (for males) and 51.1 years (for females) in 1900 to 72.1 years (for males) and 79.0 years (for females) in 1990. How do you account for increased life expectancy within the framework of your environmental insults inflicted upon them during this time?

Lloyd

My thinking is much along the same lines as Greg's (only I know a whole lot more about why my car starts now I believe in my simplistic way that the reason we all have "Parkinson's" is because in all cases the same area of the brain in damaged, but in different ways. I have a tremor because some sub-system in the same main system as you, has been damaged by whatever, while in your case another sub system of the same main system has incurred another type of damage. I'm not a science head or even much of a researcher, but I've been looking at this picture for ten years and the business of the Label we've each had attached to our disorder is a broad spectrum one within which many subsystems lie (or is it lay?). Not unlike the universe.

I also agree with everything michael says about what is going on around us. A quote from a publication just put out by the local (provincial) Advocacy movement says "The incidence of Parkinson's is increasing at a rapid rate, and more than can be explained by the rate at which the Population is aging" I'm sure this comes from the Pacific Parkinson's Research Centre and I know from speaking with some of the specialists who work there, they are finding the increase in YO particularily alarming.

As layman we don't have the credentials to tell anyone how to go about correcting the percieved flaws in the system. The paradox is we are the "professionals" when it comes to knowing what is going on every minute of every day in our own lives. What it MEANS to live with PD. But we lack the vocabulary or even the voice to make ourselves understood. There is a synaptic gap between the researchers and the subjects of the research. Crossing that gap is one of our biggest obsticles (and great frustrations) for many of us.

I agree with micheal also that we must become our own advocates and researchers and analysts (not his words...but my interpretation) and find the pieces that are missing (rick everett & ron hutton personified) in our own heads. That's why a forum like this is sooooo valuable. It's a place to exchange information and ideas and whatever else anyone wants to throw in the stew. When BT went down last summer I felt like I lost my right arm. I was suddenly out there by myself. We lost some valuable voices and have not fully recovered from that hit.

Personally I don't expect a cure in my lifetime (another 20 years...God help me). I do think I can maintain a somewhat precarious balance by drawing on the best minds I can find (and some of them are here) and constantly monitoring what my body is doing, and by being proactive in using what I learn. Having said that -I havn't been on my treadmill for months.

In closing, Greg's comments reminded me of a quote from somewhere ... "marching in formation has nothing to do with going in the right direction!" May the Force be with us JW

Amidst the mountains of research, and the trillions of dollars spent there have actually been medical breakthroughs which have added years to the average life expectancy of humans as well as our pets. Anti ageing drugs, knowledge of which vitamin or mineral does what. For example, when I first began to research Pd, the average life expectancy of a person with Pd was approximately 10 years after diagnosis. It is now not uncommon for PWP to live 20 or more years after diagnosis due to more knowledge of the disease. On the other hand, we are also seeing more and more younger people who have Pd. We are becoming a chemically dependent society. The following website gives a great explanation:

http://www.laskerfoundation.org/awards/awardsrb.html

michael b.

To discuss one small part of what Greg wrote about: I don't think stem cells and gene therapy will ever be THE cure for PD because of the extreme difficulty of the delivery system. Brain surgery for 100,000 Canadians? Our health care system could not even dream of providing that. The selection system would be exacting. Right now you can't get the better hip replacement available (Birmingham hip) in Alberta if you're over 60. So I find it incredibly frustrating that so much money and time are going into impractical research.

I agree with all of you but feel as Thelma does. At this stage it doesn't matter what the cause is as much as it matters that I get symptom relief, preferrably neuro regenerative.

Greg, there is an article by Dr. Anthony Lang calling for exactly what you are saying. I couldn't find it on this computer, but he calls for more basic research due to trial failures. Dr. Lang authored the Amgen GDNF trial paper.

This seems like a good place to tell you some of the things that have been going on in an effort to get YOUR voices heard.

Yesterday the PDF held the first in a series of round tables on including patients at the table and improving clinical trials for all stakeholders. This is the third Round Table to result from the GDNF halt and Amgen's callous sacrificing of the patients for which GDNF worked safely for 3+ years. One was held with the clinical trial researchers in San Diego last year at the AAN conference and the other was held by the Fox Foundation in New York. I am humbled to be a part of these round tables and can say that I attended both last year and listened by phone yesterday.

All stakeholders in the drug development process were there. Neurologists, researchers, bio tech, academcia, the FDA, the NIH, clinical trial coordinators, I know I am leaving people out. Three patients attended who had been in trials, three patient consultants for the FDA PD sector observed, and three of us listened by phone.

You can imagine the wealth of information and opinion you can share at this type of Round Table. And the best part of all was that the end of the day recommendations are things we have been doing for a couple of years.

So Greg, you keep reading - before you know it you will realize that you know more than some people that would truly surprise you and that they are finally starting to "get it". But we have a long way to go.

The topic yesterday was developing Patient Trust.

Paula

But where to begin? As I posted elsewhere, the way things are done is not necessarily the best way for us. I think it is time to question everything.

Let's start with PD itself. What makes us think there is a cause? I know that sounds absurd, but what if there are a dozen ways to get PD? Or more precisely, a dozen things that if you encounter any three in life you have a fifty-fifty chance of getting it. Run into four of them and it goes up to 75%. Any four. How does that alter the picture? Or what if you must ave either cause "A" or "B" but can have any two of the other ten? Would that explain why we are all different yet the same?

I'm not making that up myself. Researchers are considering it and have called it the "Many Hits" explanation.

And what about the actual disease? Dead cells in the substantia nigra causes a shortage of dopamine that makes it hard to move? Hah! That's a crock! There is damage throughout our entire nervous system and the SN is one of the LAST places it shows up. Using the definitive marker of PD, the Lewy body, a German scientist named Braack has shown that PD starts in the stomach and nose and creeps slowly through the nervous system over the years until it ends up at the SN! Virus? Toxin? Autoimmunity? All the above? Yet the Big Boys are fascinated by the SN and that's where all the research money goes. What flippin' good are stem cells going to do if something is waiting there to kill them off?

Cures and treatments? They're looking for a Magic Bullet to take out the swarm of hornets! Locked into the single cause mindset, all they can envision is a single cure. What if the way back to health requires something more? Maybe a lifestyle built around looking out for ourselves, hell, loving ourselves? That seems absurd too. Until you start looking at the endocrine system's role in all this. Talk about an Alice-in-Wonderland.... Maybe the health food nuts (like me, sometimes) are right. Maybe the whole thing is so complex that the cure is to empower the body's own repair systems. Ever hear of an adaptogen? It is a class of herbs that do just that. Been used in India and China for centuries.

And who says that the vaunted Scientific Method is the best approach here. Slow? Yes. Sure? Wellll... Try a little thought experiment based on the fact that we now have the Internet. Say a thousand Parkies joined forces via a forum like this one. First step, they all wade through a series of Power Point peresentations that gives them a basic education in neurology, immunology, endocrinology, anatomy, etc. to add to what they already know (who says engineering is irrelevant?). Teach them how to mine the databases of the world via their keyboards. One of sciences problems is specialization. Neurologists and immunologists seldom talk. The result is that a complicated condition like PD that overlaps the sides of the various professional boxes suffers. But the Parkies would be Generalists and would be ignoring the boxes in searchn of the patterns the pros never see.

Suppose these citizen-scientists comb through the knowledge base and identify the ten most likely things. A tousand people look through and come up with their ten. Compile the numbers and make a list. Divide up into a hundred teams of ten each. Ten teams to a unit. Each unit takes one item off the list and the lead team of that unit cautiously tries it and reports back on any dangers or positive effects. Standardize the testing for monitoring changes in function in the first phase (therapies) and work on cures in the second. If it looks promising additional teams try it too. In thirty days you have a pretty good idea on therapeutic value for the ten most likely herbs, spices, exercices, etc. In a year you have covered the top 100. Then you can switch part of the team into longterm trials of the top ten and so on.

Risky? You bet! But if you think your current regimen isn't you'd better think again. Potential reward? Very high. Don't even think about that one for the current drugs. It will just scare you. Chaotic? Yep. Chaos is not necessarily bad. Especially when time is important. Drop a needle on the floor and you look carefully until you find it. However, if you only have thirty seconds to do so you adopt an entirely different strategy.

Opinions? Yes, I have a few....

It isn't just PD that this is relevant to either, there are a fair few neurological diseases that seem to have borderline cases where people seem to maybe have fibro/pd or ms/altzheimers pd/ms etc., and things are not so easy to sort out. Chances are there won't be a cure, but more likely a series pf breakthrough 'accidents' that will allow for better quality of life for people with different PD issues. I am not sure that there will be a PD 'cure', just like there won't be a definitive cancer sure, how could there be with so many different variables. And what of MSA or LBD? What I would like to see is that all people with this spectrum of disorders are treated properly in the here and now, no matter how old or infirm they are, and that medical science starts to document what is really going on with patients, instead of trying to pattern match people to what must surely now be an obsolete picture. If for instance they started to really look at the non-motor symptoms in thousands of people surely they would learn something new, and what about the pain that is often said to not be a PD symptom.....!!??

Not that I don't want to see research, but that whichever way you look at it, science is simply not as rational as it would like to be seen to be. I am with those that think that the approach to the problem is as important to finding viable treatments as ever, and that maybe research is not as open-minded as it could be...

Lindy