PCD


Site last modified 3/16/02
This site is still  very much "under construction" - it will change often, so please bookmark it and check back often. PCD stands for Paraneoplastic Cerebellar Degeneration. It is a rare form of Ataxia, which is itself rare. Even most medical people have never heard of it, or what they "know" is wrong! And therefore dangerous. Pat Doyle was caregiver to his wife, Linda, who eventually passed away from the cancer which PCD is often associated with. He also put in the effort to put together most of what you'll see here. If you want to go to the previous PCD site, clickhere.. For the International Association of Ataxia Friends (InterNAF), clickhere. For disability in general, (WAPD) clickhere. For NAF, click here. Note that the pages found here are NOT done with "frames". This is because so many use browsers that can't handle them. For a travel agency that is VERY disabled aware, click here.

There are several pages you might find useful. Like:
 

What is PCD?

research

an article

some members

spiritual help

some humor

caregiver's page
 
 
 

For a Rockefeller University medical paper by Dr. Darnell, click here.
 
 

The International Paraneoplastic Association was formed in 1998 to offer support and education for those affected by neurological paraneoplastic disorders including Paraneoplastic Cerebellar Degeneration (PCD), Opsoclonus-Myoclonus Syndrome (OMS) and Eaton-Lambert Syndrome(ELS). Our goal is also to develop greater awareness of paraneoplastic disorders within the medical community and promote research into cures for these disorders.

Neurological Paraneoplastic Syndromes are a group of rare degenerative diseases linked to the body's immune response to cancer. Symptoms include gradual loss of the ability to walk, shaking hands, dizziness, difficulty talking, chaotic eye movements and other motor problems. The symptoms, which vary from mild to severe, may precede the discovery of cancer by months or even years and sufferers may initially be misdiagnosed as suffering from a stroke, alcoholism, Parkinson's and other diseases.

The founding members of the IPA are caregivers and sufferers who came together to exchange information about care and treatment. Over time they came to realize that the support they give one another is a very valuable part of their association and some genuine friendships have developed. New members are, of course, always warmly welcomed into their ranks.

The association also maintains an E-mail list where members exchange information and support one another. To subscribe to PCD-L, send an email message to:
mailserv@hugse1.harvard.edu

or click here.

Leave the subject heading blank. In the body of the Message Text, type the following:
Subscribe PCD-L "Your Name"
Send the message. You will receive an automated welcome message from Rick Hopper, the list manager, within one minute of signing up.

Please note: The information on this website is not intended as a substitute for professional medical help or advice butis to be used only as an aid in understanding current medical knowledge.A physician should always be consulted for any health problem or medical condition.

For information on Paraneoplastic disorders or the Association not found in
these web pages, please contact:
Carolyn Lawrence
International Paraneoplastic Association
Executive Director
email: CZLAW@aol.com or clickhere.

This site built and maintained by Martin R. Burke, Webmaster and geek-with-PCD.If you want to contact him, click here.

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