4.04 CBGD - Mother's disease

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.