(no subject)

[Guest guest]

Hello to everyone I am new on the list and wish to introduce myself. My name is

and my father Rice died of CJD in august of 1979. I was 17 years old

and he died on my first day I was to enter college.My father was dying through

my

sixteenth year and succumbed finally at the age of 43. He was young,a head of

brown wavy hair and in beautiful shape.My father was humble,hard

working,generous,devout catholic and a fine example of living the word.My father

lived through the affliction for too long and held on because of his

determination and strength. He did not know when to let go.Twenty years ago few

doctors

ever heard of CJD.He was misdiagnosed by the finest neurologists.My father was

on psychiatric ward,he was in nursing homes,the finest hospitals and finally the

VA hospital.We were told he would live forever in his condition and were told at

other

times he had the DT's. We had no support ,answer's,or help. My mother knew

though at what point to arrange the funeral she saw it coming,I refused. Finally

the night before he died I prayed to the Virgin to take him,it just hurt too

bad,and if

he would not let go he should be taken.Daddy died a sack of bones. He was

ridden with bed sores,he shook so bad he cut his chest up daily,he was on a

feeding tube,could not speak,and his eyes were wild and at times sad and

questioning.After he had one visitor they never came back.He had a congregation

full of friend's but mom never really reached out for help. My brother and

sister

never visited but mom was a angel of mercy and we both visited and tended to

him.Words cannot express the deep sadness and hurt I still feel today.I yearn

for my father and the day that I can hold him again.I have never seen such

destruction like that of this affliction.It has taken 20 years for me to reach

out for answers and help. I was a child then and it devastated me horribly.I

could not believe God would let that happen to the father that kneeled with me

every night and taught me my prayers,a man who stood up to ignorance and

bigots,a man

who was decent and god fearing. It hurt down to my soul and still does.My

fathers

death was finally diagnosed on the autopsy table as Cjd. Thank god there is

support out there today and hopefully through activism answers will come forth.

Thank you all for listening and god bless all our loved ones.