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Old 06-18-2007, 04:30 AM
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vlhperry vlhperry is offline
Member aka Dianna Wood
 
Join Date: Oct 2006
Posts: 736
15 yr Member
vlhperry vlhperry is offline
Member aka Dianna Wood
vlhperry's Avatar
 
Join Date: Oct 2006
Posts: 736
15 yr Member
Default Genetic Research

My information is supported by research studies. Please contact the researcher I listed in my Title to affirm the study. Genetic research is still in its infancy stages but is evolving fast. I do not doubt the outcome of the research as it is carefully documented and based on science and not on guesswork. We can make any theory look reasonable if we really believe in it. The genetic information does not back up your theory. The more persons who participate in genetic research, the sooner we might solve the puzzle of PD. Proof of rotenene poisoning with mutations of the Parkin2 mutations is one limb on the tree. It could be that it is a matter of degree of exposure to toxins that determines who could be a branch which feeds into a limb.

Understanding how the rotenene and the gene cause the Parkinson's disease is the first step. The second will be to find a way to compensate for the Parkin2 genetic mutation to prevent or substitute a way to prevent the protein mutations normally marked for destruction by normal Parkin2 cells.

Right now the genetic information is being collected and the information derived is sold to pharmaceutical industries who patent different lines. Some create patents before they know what possibilities there are on its use to cure more than one disease. If these patents continue to be allowed, it will hinder research dramatically. We, the patients who participate in this research, are the only ones who can stop this practice by ceasing participation in the studies or contacting our legislators and urging them to pass the bill introduced by a California representative as a bipartisen issue.

The only reason I am sure I have the mutations is because I had the test performed by Allinia Diagnostics, the only commercial company offering the test. If you participate in private research, under the contracts the patients sign, you sign away not only right to your gene information, a very personal piece of information which will help you make treatment decisions, but also your right to know if you have mutations.

Persons who have more than one mutation have different symptoms than those with no mutations. They are more prone to dystonia than tremors, they are extremely sensitive to levodopa/carpadopa therapy (too much causes a rare malignant syndrome which I experienced twice in one summer,) treatment by muscle relaxants are safer, eye problems develop more, and other numerous symptoms. As persons with mutations approach their senior years the symptoms speed up until they are the same as other Parkinson patients. In Europe these patients are classified as having Parkin disease, not idiopathic Parkinson's disease. This classification is important because the treatment is geared toward the different symptoms. In Europe, where patents are almost nonexistant, patients are aware of if they have mutations in their genes and share the information. In America, the pharmaceutical industry patents gene information as soon as a strand of DNA has been completed, and does not share information. They then claim that America has the most advanced medical technology in the world. That is why persons with the money come to the Mayo clinics for treatment. Only they can afford to pay the price for the advanced, experimental procedures.

Meanwhile the poor in the U.S., like veterans, are used as gunea pigs in research studies to come up with the technology to help the rich Europeons. And the average American must pay 4 times the costs for the same meds sold in other countries because the pharmaceutical industry does not operate as a "free market industry." They do this by lobbying legislatures to protect America's advanced technology. I would rather see our technology shared for the benefit of all the world. World cooperation and world health take first place over America's pride in their technology. For those without the information to help themselves, or afford to pay for advanced technology the current government mentality of, "Let them eat cake," is no longer plausable or tolerable by a modern society.

Yes, my spelling and memory are going to the devil, but the message is understood and documented. The BBB theory is only that: An unproven theory not proven or documented. The scientific community is the best educated and are working hard again, after a 30 year hiatis of treating symptoms, and not working to understand the disease and its causes. The cure will come more quickly, thanks to people like Caroline, Peg, Joan Blessington Snyder, and others who pioneered patient advocacy groups, speaking out loudly to their congressmen, "we are mad as ****, and we're not going to take it (treating symptoms only) anymore. That, accompanied by the aging baby boom generation, will kick start the government to search for a cure. They may be a bit slow in getting it, but the beginning of the baby boom generation has just hit the 60's age category and as Parkinson's disease rises on the "cause of death" list so will the money to find a cure. Remember, we live in a Supply and Demand economy. The demand is just beginning.
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