March 2006

Early in March she tells me that she is unable to regulate the shower temperature. Her spinal tap fluid is sent to the Mayo Clinic. It takes three weeks to get the results. Dr. Erlich calls us in and gives us the dreaded news. He is 98% sure that Fumi has CJD. He tells us there is no known treatment available. He has heard of a clinical study being done at UCSF and wonders if we are interested. After a short discussion, we agree. He says he will call UCSF and ask if we can be enrolled. When we arrive home, a message is waiting for us from Dr. Haman of UCSF. I call, and she asks a few questions and then asks us to be at UCSF the next Monday morning at 8 AM. I decide to drive there since we would be able to visit our son, Ken in Palo Alto. To my shock, it seems that she is unable to neither attach her seat belt nor adjust her seat. We arrive at UCSF and she undergoes 4 days of grueling tests. After the second day, she cries and asks to go home. After a lengthy conference where we appeal to her sense of duty and how generations of patients after her will benefit and she agrees to continue. It should be mentioned that in our Methodist church she was the chairperson of the missions and social concerns committee. So it was ingrained in her to work for other unfortunate persons. A good friend of Fumi tells her of another lady in San Jose that has CJD and is in a coma but kept alive on life support. Fumi then makes three requests:

1. No life support and no resuscitation,
2. No nursing home, and
3. Good pain management, as she hates to be in pain.

I agree.