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.
Caregiver
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.
IT
WILL HELP THE CAUSE
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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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