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To list readers: This is my first experience with e-mail so please bear with
any faux pas. I'm 73, widowed, retired aerospace engineer, diagnosed with PD
about 2 years ago but in hindsight recall much earlier symptoms. The most
prominent are tremor and chronic fatigue. Tremor responds to alcohol and
primidone (Mysoline), leading me to suspect ET rather than PD. But the gait
changes, fatigue, and severe seborrhea are PD symptoms, so I take levodopa/
carbidopa (Sinemet) as well. My neurologist at Kaiser advised to experiment
(cautiously) with medication so I take both, just to be sure. Medical books
also advise eliminating other possibilities, such as glioma, and I recently
had an MRI scan. Currently my main concern is the hazard and burden of
living alone, maintaining house, cars, and a big hillside backyard. I joined
the local chapter of APDA, where I undertook to scan a limited number of
medical journals and review articles for the newsletter. Should like to
hear from others (especially local) who may wish to share advice and
experience.
In our SoCal chapter there has been some casual talk about a national
registry of PD patients. This might be of great value in tracking down the
etiology of PD, but obviously needs very careful planning, which hasn't
appeared as yet. Any thoughts about this?
Finally, I observe several inquiries that might have been avoided by
reference to standard literature on PD, and would recommend that any PD
patient or caregiver own these three major books:
-Physician's Desk Reference (PDR)-The "official" dope on all prescription
drugs. Revised annually, costs about $55. Typical format includes (Chemical)
Description, Clinical Pharmacology, Indications and Usage, Contraindications,
Warnings, Precautions, Adverse Reactions, Dosage and Administration, and How
Supplied. This is the same data required by the FDA to be packaged with each
drug. Also includes a photo of each pill. Main objection is small type and
unwieldy size (currently a hefty 7 pounds).
-The Merck Manual. While you're waiting for the Dr. he's probably doing a
quick brush-up (just kidding). Revised about every 5 years, currently 1992.
Differs from the popular "home reference" books in being written for and by
doctors, usually prominent specialists. You have to dig through a lot of
medical jargon, but the articles are unsurpassed in reliability and
authority. Thumb-indexed, covers just about every known disease. Typical
article will include Etiology, Diagnosis, Prognosis and Treatment (including
drugs and dosage). Current edition is 2844 pages of 7-point type.
-Parkinson's Disease, by Roger Duvoisin MD. The best, most comprehensive
"layman's" reference I have found. Although sold in bookstores, may be had
free from the publisher, Du Pont Pharma (makers of Sinemet), if you are a
PD patient and call the (800) number given under Sinemet in the PDR.
These books of course can't cover current research, but they will impart a
solid background of basic knowledge.
Cheers,
J. R. Bruman  (818) 789-3694
3527 Cody Road
Sherman Oaks, CA 91403
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