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  The Caregivers Guide to CBGD
Caregivers Case Histories | Features and Glossary | Network Support Groups

Thanks for Visiting
Welcome to the online version of the CBGD Caregivers Report.

Special thanks to: Richard J. Caselli, M.D., Neurology, Mayo Clinic, Scottsdale, AZ
Geri Hall, Ph.D., ARNP, CNS, University of Iowa Center on Aging, Iowa City, Iowa
Mauri Reizes, ACSW, Alzheimer's Association, Phoenix, AZ

For encouraging me to complete this report and to all of you who cared enough to contribute to it so that others may benefit from your experiences.


Dedicated to my wife Barbara and all those other stalwart souls who have braved the ravages of CBGD.

Download this entire Report:
The "CBGD Caregivers Report" may be downloaded in PDF format for offline reading or printing. Click here for instructions.

For those without Internet capability who are concerned with CBGD, a printed copy may be obtained at no charge on request.

Compiled and published by Alan G. McIlvaine and distributed by Alan's daughter, Barbara Tingom.
Barbara Tingom
6628 E. Beryl Ave.
Scottsdale, Az 85253
Tel: 480-948-3814
Fax: 480-483-6697

Donations: Marked for research on Dementia to any medical research facility that has an active program for these rare brain diseases will be appreciated.


  Foreword by Caselli
Corticobasal Ganglionic Degeneration, or CBGD, is not a common illness. It is difficult to pronounce, let alone to understand. In a world full of neurologic disease oriented foundations, such as the United Parkinson’s Foundation, Alzheimer’s Association, Multiple Sclerosis Society, and Amyotrophic Lateral Sclerosis Society of America (to name only a few), there is no, nor is there likely to soon be, a “Corticobasal Ganglionic Degeneration Organization.” Yet this disease exists. It impacts real people and real families. It presents overwhelming challenges to all it touches. It is a profound condition that effects our ability to communicate through spoken and written word, and gesture. Yet it typically leaves our comprehension and insight intact. A common theme which emerges for the patient and their family is isolation. The patient can feel progressively cut off from their ability to communicate with the outside world. Their family feels isolated from the medical and caregiver community because few people understand this disease, and there are few support groups or organizations dedicated to it.

This remarkable monograph is a caregiver’s attempt to fight back against the isolation of CBGD. Alan Mcllvaine shares generously, the experience of his wife Barbara (who was my patient) and himself in an effort to break that isolation. He is a humanitarian magnet who has attracted other caregivers to share their personal stories of CBGD and what we are given, then, is a collection of true case histories, as personal as they are medical. The goal is to bridge that isolation. Those of you who suffer with, or are close to someone who suffers with CBGD are not alone. We know what you are experiencing. Alan Mcllvaine, Darcy Croissant, Sandra Till, Robert Hall, Louise Davis, Sandra Roberts, Theresa Roberts and a caregiver who wishes to remain anonymous share in these pages their experiences with CBGD. Additional contributions come from, Dr. Geri Hall, Dr. Bradley Boeve, Attorney Kevin McFadden and Financial Planner Tom Mills. General Douglas McArthur taught us that greatness is defined by ordinary people confronting great challenges. These are very great people.

To Alan and his late wife Barbara, to my other patients and their families with diseases I lack the power to cure, I would like to say, that their illness and how they handle it matters enormously. The world is watching. The world is vulnerable to the very illness you are now confronting and the world is afraid of it. Teach the world to be brave. You have that opportunity.

Richard J. Caselli, M.D.
Scottsdale, Arizona

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