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FREQUENTLY ASKED QUESTIONS p.1 of 2 Members of this mail list seem to represent a very wide range of knowledge and experience. I notice the continual arrival of new subscribers, sounding rather bewildered, and often asking similar questions. Here is a try at some answers, which perhaps can serve as a first reference from the list archives. I don't pretend to authority (not an MD) nor to scrupulous accuracy, for the sake of brevity; but offer this as one patient to another, for what it's worth. Q. I'm recently diagnosed with Parkinson's Disease. Exactly what is Parkinson's Disease? A. PD, named for the doctor who first described it in 1817, is one of several progressively degenerative diseases that originate in different parts of the brain. In PD, cells of the substantia nigra (black stuff) gradually stop producing dopamine, a chemical needed to transmit signals between nerve cells. Symptoms first noticed are usually defects in motor control, affecting motion, balance, and coordination. These symptoms when due to some disease other than PD are called "parkinsonism". Q. What may be expected as PD progresses? A. Although PD may eventually lead to physical disability, it is seldom listed as the cause of death because its progression is so slow, and other diseases of old age may overtake it. Symptoms gradually worsen, but disability may be delayed for years or even decades by currently available treatment. In late stages of PD, impairment of mental and autonomous (such as bowel) function begins to appear. Q. Is there a cure for PD? A. No, but researchers are optimistic. A cure must not only restore the lost function, but eliminate the cause, to prevent continued progression or recurrence of the disease. Scientists think PD may be linked to a genetic defect in the failed cells, and if that can be found, perhaps normal cells may be made to assume the function of the defective ones. Q. What treatment for PD is available? A. Since a cure is not yet known, all current treatment is aimed at relieving symptoms or delaying their progression. PD is the only member of its group of related diseases for which specific and effective treatment is available. There are three main classes: (1) drugs, aimed at restoring or more efficiently using the supply of dopamine; (2) physical intervention, where a probe is inserted into the affected area of the brain, and either destroys or stimulates that area (thalamotomy, pallidotomy, deep-brain stimulation); (3) tissue transplantation, where new nerve cells, usually collected from aborted human fetuses, are emplaced in the hope they will grow and assume the lost host functions. Q. What about unapproved treatment? A. Don't know all the gov't rules for sure, but think they step in if any really outrageous claim or tabu substance, such as opium, is offered. Many modern drugs have folk-medicine origins. The only warning is, no protection from Uncle Sam: buyer beware! FREQUENTLY ASKED QUESTIONS p.2 of 2 Q. How can I be sure that what I have is really PD? A. As of yet, the only fully certain diagnosis is by pathological examination of the substantia nigra, where loss of the pigmented cells, by definition the basis of PD, can be seen. However, there are many symptoms and signs by which to evaluate a living patient. The trouble is that occurrence of these symptoms varies widely between patients, and most of them also occur in other diseases that can be mistaken for PD. The "classic triad" of stiffness, slowed movement, and tremor, is not complete in every patient. The neurologist therefore bases his judgement on the symptoms and signs as a group, rather than any single one. Judgement is helped by the fact that most other PD-like diseases are relatively rare. Dopamine replacement or enhancement helps symptoms briefly in some PD-related diseases, but long-term only in PD. Since a main reason for the diagnosis is to decide whether to use dopamine therapy, its continued success is a pretty useful indicator. Q. Who gets PD? A. PD is thought to afflict about 1% of the U.S., with no obvious bias in gender, race, location, or lifestyle. It usually appears in the 6th or 7th decade, but often much younger. Numerous familial clusters have been found, but their significance is unknown. A large proportion of PD cases may be undiagnosed. A large-scale registry might help to clarify this question but, mainly since it would have to be run by the government, many people object to the idea. Q: What causes PD? A. We don't know. Diligent search for an environmental factor has failed. There seems to be a genetic factor, but most cases don't have a family linkage. The current idea is a combination: an obscure cellular mutation may be more vulnerable to an as yet unknown environmental factor that doesn't affect everyone. For example, smokers don't get PD as often as non-smokers; or conversely, people with PD are less likely to be smokers. Q: Why don't doctors talk English? A: Not really a FAQ, but will answer anyway. In the renaissance era, not many could read and write; scholars and others used Latin to communicate between different nationalities. Textbooks were in Latin, and native-language texts didn't become common until nearly the 1800s. Doctors keep the tradition, partly because it offers great precision: "substantia nigra" doesn't mean just any "black stuff", but a very definite part of the brain that everyone recognizes. Likewise, "globus pallidus", "corpus striatum", and so forth. J. R. Bruman (818) 789-3694 3527 Cody Road Sherman Oaks CA 91403