By Kevin X Kyle


            On February 28, 2009, Jack Dionisio and I attended the 1st Annual Parkinson’s Disease Informal Research Discussion Session between Scientists and the Parkinson’s Community. This session was held in collaboration with the New Jersey Chapter of the American Parkinson Disease Association and the Center for Environmental Exposures and Disease (CEED) at the University of Medicine and Dentistry of New Jersey and Rutgers, The State University of New Jersey.


          The last two pages of this report contain brief bios of the attending scientists. There were 12 scientists and 24 community members present. Questions were handed to the moderator before the session began. Following a sumptuous breakfast the 2 hour program began at 10:00AM. What follows are the Questions the attending scientists were asked and their Answers. If there is more than one answer it means more than one scientist contributed his/her own thoughts. Not all questions submitted were asked.


Q.                    What is the most promising research to prevent/stop PD?


A1           We need to understand the generic underpinnings of PD to develop Biomarkers and eventually preventative therapies. We cannot yet predict PD


A2            It is important to study the effect of environment on neural degeneration. There is currently a lot of controversy as to how this degeneration happens but studying the environment is just as important as the generic focus


Q.                           What progress is being made in Stem Cell Research?


     A.           This is a VERY broad area. The public mostly focuses on cell replacement of diseased cells. This area is at a very early stage of development. There is a lot more work needed to be done before we can program cells to produce proteins that stimulate cells to grow. Stem cell research can also be used to make models of PD patients to help test drugs and do testing on lab made PD cells. Successful transfer of stem cells into humans is years away


     Q.          What is the “Sleep Effect”?


     A.           One of the most common problems of patients with PD is trouble falling asleep and staying asleep. PD patients are less mobile during sleep and cannot “roll out” of painful positions                      as non-PD people and therefore wake up more frequently.  Changes in the brain seem to affect sleep and quality of life is affected because of sleep deprivation. More research needs to be done in this area.


      Q.            What can be done about the high cost of PD medication?


      A.             Those drugs under patent can be costly. Many doctors prescribe the drugs sold by their drug company sales reps. These doctors might not be aware of the availability of generic brands. PD patients need to be sure their doctor is familiar with PD medication options. In the US new drugs are compared only to placebo not to existing drugs. Europe does test new drugs with existing drugs. The US method can result in more drugs available and can increase the confusion of which to choose.


       Q.        Is there a link between PD and Melanoma?


        A.        YES. Research has shown that people with PD are more likely to get melanoma. There is not a high incidence and we don’t know why, but there is a connection. Wear sunblock.


       Q.        Are problems with balance a result of Deep Brain Stimulation?


       A1.       No, DBS is not designed to help balance or swallowing problems.


       A2.       Yes, after a number of years as the disease progresses problems with balance get worse.


        A3.      There are new techniques of DBS being studied that will address balance issues, but are not ready for patient testing.


 Q.                    Can DBS help my posture problems?


A.                  We don’t think so. There has been no research done since it is not a common problem.


Q.               Is there an environmental toxin relevant to PD that we can remove from the environment?        


         A.      This is a tough area. Research on environment influences is obtained from PD patient questionnaires – answers are not measurable. WE HAVE identified several compounds that SEEM to predict PD but cannot say with any evidence a specific chemical or product has got to be removed. We are continuing to research long lasting compounds and their affect of the onset of PD, but there is very little data on what specific pesticides were ever used by area. For example, we might believe certain classes of pesticide create risk but we don’t know specifically what chemical caused the PD. NOTE: While PD was named in 1817; research suggests a description of PD in 10,000 year old records that specify a certain plant for treatment – that plant contains Levadopa!!


          Q.     Is exercise good?


          A.      There are clearly benefits to exercise. It has been demonstrated in lab mice that exercise can mimic the drugs that reduce tremors. Exercise can also help with balance issues.


           Q.      What about music?


           A1.   This is not being actively researched.


           A2.   The aspect of rhythm and how the brain responds to the “beats” might have something to do with the apparent helpfulness of music on PD patients.


 Q.               Is there really a Parkinson’s personality?


A.             Yes and No. In studies of large groups there is evidence that some personality traits are more prone to PD, e.g. doesn’t like taking risks. In small group studies there is no evidence. The fact is no two Parkinson’s patients are alike. PD is not one disease.


           Q.    Besides exercise is there anything else we can do?


A.             Maintain general health. Good nutrition. Regular sleep. Reduce stress.


           Q.    Since environmental toxins are being more controlled, shouldn’t PD be decreasing?


          A1.    Since the population is aging we see more PD patients because it is age related.


          A2.    When we control for the increase in population, there is no change in the incidence of PD. It is neither increasing nor decreasing. There does not yet exist the “smoking gun” evidence like the relationship between smoking and lung cancer. NOTE: Are farmers more likely to get PD or is the PD personality more likely to stay on the farm (less risk)


           Q.    What about CoQ10?


           A.     Several years ago a small research study seemed to say CoQ10 taken in high doses (2400 MG/day) might slow the progression of PD. A large scale study has finally been funded and trails are starting at Cornell University.


           Q.    Any research being done on early onset PD?


           A1    Most seem to be caused by gene mutation.


           A2.   There is no evidence it is increasing – we are just more aware of it.