HDLS - it has many challanges

Hi to all of you. My name is Lisa and I am the primary caregiver for my husband that was diagnosed in June of 2006, at the Mayo Clinic in Jacksonville Fl., with a very rare form of Leukodystrophy called, HDLS - short version for Hereditary Diffuse Leukoencephalopathy w/ axional sephroids. This leukodystrophy carries with it eventual paralysis, loss of muscle tone and mobility. His body is deteriorating rapidly. He has gone from being able to walk, albeit with difficulty, in June of 2008, to being completely bedfast as of January 2009. His disease is progressive, degenerative, and debilitating. He has dementia due to atrophy of the brain. The atrophy began in the frontal lobe of the brain but has now spread. Yet, he is able to recognize family and friends, communicate through labored speech, eat a soft foods diet, and he is fully aware of his disease, and the course it is taking. There are many other health issues that we struggle with daily.
If anyone has this disease, or knows of a family member with this disease, and would like to share information, strategies for care, and support please, communicate with me here.
This is a horrible disease that robs a person of their life. Sometimes slowly over a period of 20 years, or rapidly, spanning 5-8 years from onset of symptoms.