a new member

[Guest guest]

I was so grateful to find this site. My Mom died of CJD 8yrs.ago & although

that might seem like long ago to some I think anyone whom has witnessed a

death to CJD understands it is a nightmare that never seems like it could

really happen. Then you have no acknowledgement from any Doctors or any

leading info. It is just this is what your Mom died of there is no cure we

know little about it and I'm sorry, go on with your life. Some might say I

was old when I lost my mom 30yrs. I lost the most incredible woman in my

life. Her symptoms started in the month of Jan.1990 by July 20, 1990 My mom

died. My mom felt weak and sick her doctor told her she had the flu, bed

rest he order. Two weeks later she told her doctor this must be more I'm too

weak , I'm feeling distorting vision,& losing the strength in her hands, Bed

rest she was order you are just not use to sitting still. See my Mom was

working for Assembly man Yelio at the time always in Albany lobbying for

children's grants, drug programs,etc. She raised 4 children and put herself

through college to receive the highest degree possible smart and extremely

humble. My MOM swore she would be become a patients advocate when she got

well. By Feb she could barely pull herself from the bed . Each time she

complained about a pain or lack of vision we took her to the hospital all

the test came back negative so of course they were saying she was crazy. By

March she barely could speak just nightmares and screaming so very scared

she was her appetite was that of a large man she was only 5ft. 125lbs. but

her weight was losing fast, of course she was tested for aids (neg). They

were confused the doctors so they just said it was a ;major depression, she

lost her motor skills and we were feeding her walking her and holding her,

and of course praying. By Mid March we couldn't take the rejection from the

local hosptials anymore and took her to the city, New York Hospital. There

she laid in the neriogly wing for testing all Neg. They also sent her to

Pane Whity a Physic ward for deep depression said the only way to snap her

out of this is shock treatment, if it was organic she would get worst

faster, she did after a week she was a vegetable no speech no eating no

walking no nothing. They suggested a brain opessy felt it was CJD when they

opened her up they said her brain was mush. They gave her no longer than a

week, we took her home to die. All the kids moved back ;in and we nursed my

;mom to heaven with my dad. My sisters children were very active in their

grandmothers death. Dolores did not last a week she lasted til July 20,1990

It was a merciless death one that will never leave my mind. I always hoped

we could find some answers or make a difference in someone else's world, but

it seemed like no one wanted to hear our story, I think they were too scared

now that so many more people are getting it people are starting to listen, I

think together we all can make a difference then My Mom wouldn't have died

in vain. A woman I work with just lost her MOm this year to cjd it is out

the and more than people know the government just wants to keep it hush

hush, thank you for welcoming me to this group. Jill(NY)