Today is Tuesday September 18, 2000. As tired as I am, I need to write quickly, and leave to go stay with my father and help. I live on very few hours of sleep and feel so guilty when I do sleep. During my awake hours my heart hurts and my gut is in knots. As I drive up the driveway to their house, I want to vomit, knowing what I am going into again, and trying to find the strength to be strong.

My father is dying. His mind is still very sharp but his body and speech is rapidly going.I wonder ever day Why! Why my father! Such a good man and good father.

Why is he being punished. He does not understand what is happening and with a whisper the other night he said, "I do not know why my health has gone down so fast." What do you say? This disease has robbed him of his dignity and his manhood.

I feel angry, helpless, hopeless, and our family feels alone. I am not done with my story. I will do that later. For now I have to go and sadly watch as my father slowly deteriates before my eyes look into his as he looks to me for answers.

Thursday Sept 21, 2000

My daughter is on homecoming court for queen. Today dressed in her white gown she went to see him before their parade.She walked in and stood in front of him. He was sitting there with head down eyes clothes his eyes opened and slowly began to look at her as she stood before him. When he finally reach her faced he whimpered and cried so hard. He knew that he would not be able to escort her during half-time. He had not spoken since Monday but some how he uttered the word beautiful.

Sept 22 - Friday

Did not see my father today was afraid it would upset him again and I was trying to enjoy this day being homecoming night for my daughter. None of my family members were able to come to her parade or homecoming night. This was suppose to be a happy time for her, her senior year. She loves her grandfather dearly and I can see the black cloud hanging over her. I sense her broken heart I see the tears in her eyes.I am not sure what to do. Do I allow her and my 13 year old son to still see him and continue to witness this horror or should I keep them away since they have already witness to much.

Sept. 23, 2000 - Sat.

Trying to rest had to work today. Going to my fathers at midnight to help.My mother and sister said he had a good day today.Talking again or at least muttering his words and sentences.He even ate today.He asked the physical therapist, "when will I walk again" "I want to walk."Even through the jerking, the trembling, the choking, his stiffness, and no sleep for two months he is still able to joke with everyone on his better days. Just another way for this disease to tease you give you a ounce of hope only too knock its victim back down and rip the hearts out of those who have to watch.

CJD takes its victims prisoners. The disease lets you know that it has complete control. That there is no way out as it ravishly destorys your body and your mind, while your family watches in horror.

There is no way to describe to people the nightmare unfolding before your eyes. You can try explaining it to people and they think they understand what you are going through. But in reality, know one knows what your eyes have witnessed. No one will ever know, except the families that have seen CJD and the horrible effects it has on its victims.

When I am trying to finally sleep or I am driving on my way home from work that is when I am haunted by what I am seeing.I will never be the same after this and neither will my family.

As I said, my story is not finished by any means.I will dedicate the rest of my life researching, learning and trying to educate others of this horrible disease that no one seems to know much about.

Anita