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Linda wrote: >Our son has epilepsy - also "idiopathic" like my PD, and there > is no other family history. I often wonder if there could be a genetic > connection - could he have inherited a genetic neurological susceptibility > from me, that under certain environmental conditions can bring on > seizure disorders, and under others bring on Parkinson's symptoms > instead? Just a theory, but I can only hope that by the next generation, > we will know how to prevent and cure both of these disorders. > Linda Linda, as always you are a fountain of information and insight. Very interesting that my son also has a form of epilepsy (partial complex seizures) which are fortunately totally controlled by Tegratol. In fact we have the same Neurologist at Kaiser Health Plan. I registered him (us) with the "gene discovery" project of the Epilepsy Foundation last year. I learned about that effort through my participation with NINDS on the "registry" project on behalf of PDF. As Curt indicated the PD organizations have been invited to participate. You never posted the email I sent you regarding the National Health Interview Survey (NHIS) for the listserv, so I am going to embarrass you by revealing that you uncovered an error in the documentation of the NHIS which is now being corrected. From NHIS: > -----Original Message----- > From: Gentleman, Jane F. > Sent: Wednesday, March 15, 2000 2:44 PM > To: Sondik, Edward J. Dr. > Cc: Mustaf, Gwen L. > Subject: RE: NHIS and Parkinsons > Re the 1999 NHIS question, "Have you EVER been told by a doctor or > other health professional that you had... Congestive heart failure? Osteoporosis? >Parkinson's disease?" > > It should have read, "This next question is a periodic question," not "This next question is a periodic heart disease question." We will fix that in our documentation and on our Internet site ASAP. > Please thank Perry Cohen for bringing this to our attention. His > colleague was not hallucinating. > And thanks to Rob Hill, Pei-Lu Chiu, Barbara Stussman, and Neil > Russell in DHIS for helping to sort this out. > > Jane F. Gentleman, Ph.D., Director > Division of Health Interview Statistics > National Center for Health Statistics With help from the research and vigilance that you consistently provide, we are beginning to make progress on filling the vacuum of information on the extent of the public health problem that Parkinson's is. We don't know how many people have PD and to what extent there are "disparities" (a major current theme in Federal health policy) in different ethnic and socioeconomic groups. Getting a question on the NHIS is a way to begin to identify and track the public health problem and therefore begin to solve the problem. As you point out this is the first time such a question has appeared on the survey. To effectively address Health problems of PWP and related Neurodegenerative disorders, the NIH and CDC need to collaborate and expand data collection and research beyond the "registry" to include survey data. Perry Cohen