Jeff's Story
The following link takes you to a website dedicated to the memory of my son, Jeffrey Dirlam. He passed away on August 30, 2002 at the young age of 25. He had Wilson's disease which is a rare, genetically inherited malfunction of the liver. It causes the liver to store excess amounts of copper until it becomes saturated and eventually, the accumulated copper starts to destroy the liver and also enters the eyes and the brain. If the brain is involved, the person with Wilson's disease will exhibit many possible presentations. Some of these include drooling, slurring of speech, problems with swallowing and problems with walking. In some instances, a person can also either manifest psychological problems with or without the other presentations. If the disease is detected early enough, tests can be performed to determine the extent of the damage if any. Then, the person simply goes on a maintenance therapy plan using some form of zinc, the most common and FDA approved is Galzin or zinc gluconate. If the person is in a more advanced stage, then he or she must start on a chelation therapy with either Trientine or Tetrathiomolybdate (TM) and the last choice would be the most popular but also the most dangerous of the three called Penicillamine. The reason Penicillamine is the most dangerous is because in approximately 50% of the patients who use this medication, their neurological condition worsens and does NOT improve over time. This can be devastating to the patient since a majority of patients seem to start showing symptoms in their late teens or early twenties when they are in the "prime of life."
NOW AVAILABLE!
Swallow Safely How Swallowing Problems Threate The Elderly and Others
SWALLOW SAFELY
How Swallowing Problems ThreatenThe Elderly and Others.
A Caregiver’s Guide to Recognition, Treatment, and Prevention
by Roya Sayadi, Ph.D., CCC-SLP and Joel Herskowitz, M.D.
Selected Reviews:
“Don’t wait for a swallowing disaster. This book tells you how to keep a swallowing problem from becoming fatal.”
--Henry J. Heimlich, M.D.
Author of Heimlich’s Maneuvers
1984 Recipient of the Albert Lasker Public Service Award
“For people affected neurologically by disorders such as Wilson disease or Parkinson disease, swallowing problems are common and often serious. This book is written for the layperson and provides a much-needed guide for patients and their families or caregivers.”
--Carol Terry
Co-Founder, Past President & Secretary
Wilson Disease Association
Dr. Herskowitz is also the author of Twisted: The Carol Terry Story. The one act play, features Dr. Herskowitz acting as the characters of Berton Rouche, Carol Terry, and Dr. Geroge Cartwright. The play was performed at the WDA 2008 Annual Conference in Chicago.
The authors are generously donating $2.00, from the sale of each book, to the WDA. When you place your order, please state on the payment form “WDA MEMBER”.
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