Guest guest Posted November 29, 1998 Report Share Posted November 29, 1998 Dear Frances, My husband too died in 1995. It is heartbreaking and frustrating to read and read all the mailings and the voices. I believe this site is the only way we can fight back for what has happened to all of us. And remember there are those who are stricken now and suffering, their familes suffering with them. There is no choice, we can't hide and shut it all a way. It won't go away, Frances. I know, I know all of us are with you. Take care, Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 1998 Report Share Posted November 29, 1998 I have been a member of CJDVoice for a month or so now. After receiving approximately 200 messages from CJDVoice and various members, I have learned much regarding CJD. I was not aware of the different types of CJD, but I am now. The good that CJDVoice does is to be commended. Up to this time I have not wanted to relate my message, but here goes. My husband, myself and family lived in a suburb of Toronto for many years. My husband became ill with this horrible disease in March, l995. Inch by inch he died, finally on July l6, l995. The horror of it is still in my mind, even after three years. Before he became ill I had lost my parents, my six brothers, and three sisters. They all said they would never leave me alone because I was the baby. There was a wrong diagnosis in my husband's illness. As a result he was not hospitalized. I had no idea what was wrong with him. I was totally alone while he lost his speech, sight, was unable to move or walk, had horrible hallucinations, seizures, etc. He tried to strangle me one night in bed, because he thought I was one of " those Hairy Creatures " . I rolled out of bed just in time. Sometimes now I wish I had not been able to get away from his grasp. The last words he said to me were " I'm sorry " . It broke my heart, but that was Fred. A wonderful, kind human being who always thought of others first and was ready to apologize for any inconvenience he had caused. The autopsy they finally performed on him confirmed Spongiform encephalopathy-Creutzfeld Jakob Disease. After three years researchers are now doing more tests on his brain slides. Now that I am able to think more clearly, I have been looking for more information that would assist myself and other families who have lost loved ones to this disease. CJDVoice has been of great help. But frankly I am somewhat sadder now and a little more hopeless. I do know more now about CJD, more about deadly drug resistant superbugs, as a result of animals taking more antibiotics so that they will grow more quickly. I know more about beef bans that only make sense to the beef industry. I know about deadly nutritional supplements b eing totally unregulated, full of bovine products. I know that more pounds equals more money for cattle breeders. I know that you do't put the cows out to pasture to eat grass. Feed them other ground up sick animals instead. It makes more money. Now there are horses dieing from microtoxins in the grain. It is in our bread, in everything that is made of grain and everything that is fed with grain. The symptoms in these sick horses are the same as CJD. Veterinarians don't help. They don't have the answers. Once again this information is being suppressed by the gov ernment for monitary reasons. We can't eat beef, chicken or bread with confidence anymore. My son, in his wisdom asked me if we might eventually have " Soylent Green " for our supper. Possibly so! I have been asked to participate in government research regarding CJD. I want to help. I do want answers. I want my voice to be heard. But I am not confident anymore. You lose some of the old swagger when you have been knocked to your knees so many times. Is it wrong to be so negative? I just wonder if it is impossible to beat the system. Greed and deceit seem to be the winners, Perhaps the old saying " Nice guys don't win ball games " is true, after all. As to the Voices of CJD, what can we accomplish? I guess what I want to know is, does anyone in high places listen to our voices?Do any powerful organizations pay any attention to what is said? I am confident that my husband ate contaminated beef, but no-one wants to hear it. Does anyone want to learn the truth, or will I just be crying to the wind? Thanks for reading this. It has been therapy putting it into writing. Frances R. - email address - frsmith@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 1998 Report Share Posted November 29, 1998 To FS You may want to know that further review of the tissue slides can confirm/deny a CJD/BSE link. new variant CJD spongiform patterns view differently that other forms of the disease including FFI, GSS, sporadic. Francis wrote: > > > I have been a member of CJDVoice for a month or so now. After > receiving approximately 200 messages from CJDVoice and various > members, I have learned much regarding CJD. I was not aware of > the different types of CJD, but I am now. The good that CJDVoice > does is to be commended. > > Up to this time I have not wanted to relate my message, but here goes. > My husband, myself and family lived in a suburb of Toronto for many > years. My husband became ill with this horrible disease in March, > l995. Inch by inch he died, finally on July l6, l995. The horror of it is > still in my mind, even after three years. > > Before he became ill I had lost my parents, my six brothers, and three > sisters. They all said they would never leave me alone because I was > the baby. > > There was a wrong diagnosis in my husband's illness. As a result > he was not hospitalized. I had no idea what was wrong with him. I > was totally alone while he lost his speech, sight, was unable to move > or walk, had horrible hallucinations, seizures, etc. He tried to strangle > me one night in bed, because he thought I was one of " those Hairy > Creatures " . I rolled out of bed just in time. Sometimes now I wish > I had not been able to get away from his grasp. > > The last words he said to me were " I'm sorry " . It broke my heart, but > that was Fred. A wonderful, kind human being who always thought > of others first and was ready to apologize for any inconvenience he had > caused. The autopsy they finally performed on him confirmed > Spongiform encephalopathy-Creutzfeld Jakob Disease. After three > years researchers are now doing more tests on his brain slides. > > Now that I am able to think more clearly, I have been looking for more > information that would assist myself and other families who have lost > loved ones to this disease. CJDVoice has been of great help. But > frankly I am somewhat sadder now and a little more hopeless. > > I do know more now about CJD, more about deadly drug resistant > superbugs, as a result of animals taking more antibiotics so that they > will grow more quickly. I know more about beef bans that only make > sense to the beef industry. I know about deadly nutritional supplements > b eing totally unregulated, full of bovine products. I know that more > pounds equals more money for cattle breeders. I know that you do't put > the cows out to pasture to eat grass. Feed them other ground up > sick animals instead. It makes more money. > > Now there are horses dieing from microtoxins in the grain. It is in our > bread, in everything that is made of grain and everything that is fed > with grain. The symptoms in these sick horses are the same as CJD. > Veterinarians don't help. They don't have the answers. Once again > this information is being suppressed by the gov ernment for monitary > reasons. We can't eat beef, chicken or bread with confidence anymore. > My son, in his wisdom asked me if we might eventually have " Soylent > Green " for our supper. Possibly so! > > I have been asked to participate in government research regarding > CJD. I want to help. I do want answers. I want my voice to be heard. > But I am not confident anymore. You lose some of the old swagger when > you have been knocked to your knees so many times. > > Is it wrong to be so negative? I just wonder if it is impossible to beat > the system. Greed and deceit seem to be the winners, Perhaps the > old saying " Nice guys don't win ball games " is true, after all. > > As to the Voices of CJD, what can we accomplish? I guess what I > want to know is, does anyone in high places listen to our voices?Do > any powerful organizations pay any attention to what is said? > > I am confident that my husband ate contaminated beef, but no-one > wants to hear it. Does anyone want to learn the truth, or will I just be > crying to the wind? > > Thanks for reading this. It has been therapy putting it into writing. > > Frances R. - email address - frsmith@... > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 1998 Report Share Posted November 29, 1998 Fran: I read the frustration you have and know that is why we are united. Yes here in Canada too they are aware of Voice and are so many. We will continue to press for answers, and to make others aware of this horrendous disease. Together we all will make a difference. The research you mentioned is that with the CJD Surveillance unit here in Canada? Hoping that you are doing and feeling better. Compassionately, a G. Quote Link to comment Share on other sites More sharing options...
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