Guest guest Posted October 4, 1998 Report Share Posted October 4, 1998 Dear Jill, Thank you for sharing your story with us and Welcome to CJD Voice. Don't feel like you are alone anymore, your story has all the similarities of all of ours. It was one year ago today that my mother took her first trip to the emergency room because we thought she had a stroke. Same thing as your story all the tests came back ok everytime. Mom only lived for 55 days after this and passed away on Nov. 20th, 1997. It doesn't matter how old a person is when you lose someone very close to you, it hurts. I am 38 and have a young family, 4 and 6 years old, it would be nice to have her around. My father is also gone, he passed away from colon cancer in 1995. You are right, one never does forget the events of cjd, but the good times that we had are remembered more often now, rather than the nightmare. Sincerely, Robin Hawkins ---------- > > To: CJDVoice (AT) onelist (DOT) com > Subject: a new member > Date: Sunday, October 04, 1998 12:52 PM > > > > 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) > > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 1998 Report Share Posted October 5, 1998 Dear Jill - I lost my dad 10 years ago and my story sounds very much like yours. The doctors didn't know what was wrong, the initial diagnosis was paranoia. He was finally diagnosed after a brain biopsy, but he only lived 4 months after that. You will find this group to be a source of wonderful strength and support, a group of people who understand what a nightmare you have been through. God Bless! Quote Link to comment Share on other sites More sharing options...
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