Guest guest Posted December 11, 1998 Report Share Posted December 11, 1998 Terry - I am constantly amazed at your ability to dig out the news....Keep up the wonderful work! Mel S - you are doing such wonderful things for CJD awareness. I am so impressed! Thank you for devoting your time to this cause! Beverly G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 1998 Report Share Posted December 11, 1998 Terry - I am constantly amazed at your ability to dig out the news....Keep up the wonderful work! Mel S - you are doing such wonderful things for CJD awareness. I am so impressed! Thank you for devoting your time to this cause! Beverly G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 1998 Report Share Posted December 11, 1998 Terry - I am constantly amazed at your ability to dig out the news....Keep up the wonderful work! Mel S - you are doing such wonderful things for CJD awareness. I am so impressed! Thank you for devoting your time to this cause! Beverly G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 1999 Report Share Posted January 18, 1999 Terry, I would also like to know if your mother had stomach pain. My mother always mentioned she had a low stomach pain or a urinary tract infection. When she was hospitalized in November she had a complete gyn exam and tests.....nothing was found.....yet she continued to perseverate on this... Suzanne ---------- > From: Blblakeney@... > To: cjdvoice (AT) onelist (DOT) com > Subject: nvCJD > Date: Monday, January 18, 1999 6:18 PM > > From: Blblakeney@... > > Hello Terry > > I am a little confused about your mother's diagnosis. You have stated that > your mother died of nvCJD, but all of the articles and conversation on > cjdvoice say that there has been no cases of nvCJD in the U.S. Could you > please enlighten me (in lower case). Did you mother have any stomach > problem, or complain about a week stomach? > > Thank you > > Amy > Blblakeney@... > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 1999 Report Share Posted January 20, 1999 Suzanne, My mother in laws first symptom was really constipation. She would go 4-7 days without " going " . This had been going on for a few years, but the last year became worse. Tests at the Cleveland Clinic last summer pinpointed the problem to be neurological--the brain was not passing on the message to " go " despite her trying. She obviously had stomache pains and great discomfort. Does this relate to your mother's experience? Did anyone else have similar problems? Is this a common first symptom? Shortly thereafter we noticed the dramatic mental decline (about a month). Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 1999 Report Share Posted January 20, 1999 I don't know if all of this means anything. Saul had never had trouble with constipation until that last nine months of his life. I boiled the prunes and gave him that and its juices every night. Insisted that he eat the stuff, a lot of trouble and I needed to help him to expell his movements too. At the begining of this (until the last month of his life) he was eating well enough to not have this trouble with constapation. Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 1999 Report Share Posted January 20, 1999 Vicki, Yes, my mother did talk about constipation. It went on for a few years, with this past year being the worse. This could explain the stomach pain and discomfort She drank lots of water and prune juice, and ate VERY healthy, ie: low fat foods and dairy, fruits, vegetables, grains, etc. However, she wasn't a big meat eater, but did love a good hamburger... I don't know if this is a common symptom. Does anyone know? Suzanne ---------- > From: SOUKUPS@... > To: cjdvoice (AT) onelist (DOT) com > Subject: Re: nvCJD > Date: Wednesday, January 20, 1999 1:36 PM > > From: SOUKUPS@... > > Suzanne, > > My mother in laws first symptom was really constipation. She would go 4-7 > days without " going " . This had been going on for a few years, but the last > year became worse. Tests at the Cleveland Clinic last summer pinpointed the > problem to be neurological--the brain was not passing on the message to " go " > despite her trying. She obviously had stomache pains and great discomfort. > Does this relate to your mother's experience? Did anyone else have similar > problems? Is this a common first symptom? Shortly thereafter we noticed the > dramatic mental decline (about a month). > > Vicki > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 1999 Report Share Posted January 20, 1999 Suzanne- I've been told that a diet *too* low in fat can lead to constipation. Believe it or not, that's what Castor Oil is good for... > Fw: Re: nvCJD > > > > > Vicki, > Yes, my mother did talk about constipation. It went on for a few > years, with this past year being the worse. This could explain > the stomach > pain and discomfort She drank lots of water and prune juice, and ate VERY > healthy, ie: low fat foods and dairy, fruits, vegetables, grains, etc. > However, she wasn't a big meat eater, but did love a good hamburger... > I don't know if this is a common symptom. Does anyone know? > Suzanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 1999 Report Share Posted January 20, 1999 Vicki: My husband had bowel problems. In fact in went to the hospital on three different occasions to clean out his system. The nurses at the Health Care Center, started treating him for this problem, which lasted on and off for years Jackie Laplante ext.309 Re: nvCJD >From: SOUKUPS@... > >Suzanne, > >My mother in laws first symptom was really constipation. She would go 4-7 >days without " going " . This had been going on for a few years, but the last >year became worse. Tests at the Cleveland Clinic last summer pinpointed the >problem to be neurological--the brain was not passing on the message to " go " >despite her trying. She obviously had stomache pains and great discomfort. >Does this relate to your mother's experience? Did anyone else have similar >problems? Is this a common first symptom? Shortly thereafter we noticed the >dramatic mental decline (about a month). > >Vicki > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 1999 Report Share Posted January 20, 1999 Vicki,, My dad also had severe bowels problems,,,he couldn't " GO " at all.... Mum had to manually do it for him , every day or so....Laxatives or enema's didn't work...(yuk) My brother didn't have the same problem.....In fact considering that they both had genetic cjd they both showed totally different symptoms and progressed very differently....Although I must say that dad was the first in our family history to get cjd and it be genetic.....We don't even have a history of dementia...... To everyone else, I must say how disgusted I am ...They talk about animal to animal feeding , which is wrong and now we are reaping what we've sown....BUT Dura Mater is no different....I didn't realise that it was taken from dead people...how disgusting...Mankind will never learn...Our creator didn't intend for the tissues of dead people to be used on the living..WHY? Because we end up with CJD or other diseases.....We are a very sick race.......In fact I am so disgusted that I can't put it into words...... Re: nvCJD >From: SOUKUPS@... > >Suzanne, > >My mother in laws first symptom was really constipation. She would go 4-7 >days without " going " . This had been going on for a few years, but the last >year became worse. Tests at the Cleveland Clinic last summer pinpointed the >problem to be neurological--the brain was not passing on the message to " go " >despite her trying. She obviously had stomache pains and great discomfort. >Does this relate to your mother's experience? Did anyone else have similar >problems? Is this a common first symptom? Shortly thereafter we noticed the >dramatic mental decline (about a month). > >Vicki > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 1999 Report Share Posted January 20, 1999 - I think I understand your frustration, but I'm curious- > Our creator > didn't intend for the tissues of dead people to be used on the > living.. Would this include organ transplants and the like? I'm not trying to be argumentative, I really am interested in your thoughts / feelings / opinions. As a future doctor, I fully expect to encounter people to whom what I consider ordinary and necessary is vile and repulsive. I'd be remiss if I didn't cull from you some level of understanding of the level of conviction you have to this principal. I know how horrible cjd is, albeit only from the stories I've read here. Is it preferable to avoid cjd at all costs, though? (Again, I'm not trying to tell you something. Don't infer anything from my question.) Wade Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 1999 Report Share Posted January 20, 1999 Hi ... Yeah I get your point....But people who donate organs ,,lets say heart' are usually taken off life support etc and haven't been dead for long... I mean you can't store a heart or lung etc for months or years... I just find the taking of body parts off a corpse as opposed to a person who has just died unsettling.....Its very hard to word this right through email...so i'm not sure how this comes across...its only my feelings,,,we all have to use our own judgement when crisis' arise... As to whether something should be avoided at all costs so that one won't get CJD or be at risk....Well,,,from someone who has a genetic mutation for CJD I can honestly tell you that I would prefer to have cancer or anything else,,but the thought that CJD will eventually claim me makes my blood run cold.....At least with other diseases (which are horrible in their own right) I would still have my mental abilities... So yes I would defineately want to avoid anything that could pass on CJD.....Seeing this disgusting disease twice is enough for me... We all have brains and we have to use them to make sound decisions,,,and then live with them... Nice to know as a future DR that your interested Re: nvCJD > > >- >I think I understand your frustration, but I'm curious- > >> Our creator >> didn't intend for the tissues of dead people to be used on the >> living.. > >Would this include organ transplants and the like? > >I'm not trying to be argumentative, I really am interested in your thoughts >/ feelings / opinions. As a future doctor, I fully expect to encounter >people to whom what I consider ordinary and necessary is vile and repulsive. >I'd be remiss if I didn't cull from you some level of understanding of the >level of conviction you have to this principal. > >I know how horrible cjd is, albeit only from the stories I've read here. Is >it preferable to avoid cjd at all costs, though? (Again, I'm not trying to >tell you something. Don't infer anything from my question.) > > Wade > > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 1999 Report Share Posted January 30, 1999 Hi Suzanne, My father didn't have stomach pain but complained of indigestion for a couple of months before the actual symptoms started appearing. His doctor put him on propulcid but took him off it when they thought he'd had a stroke. The indigestion seemed to go away but he got to the point where he couldn't swallow within a month or so. Possibly it remained but because he couldn't take any food in it became a moot point. Because each patient has varied but similar symptoms, is anyone taking account of them and compiling them where it might help make sense of all this? I sure hope so. Lynda Reier fgd222 wrote: > > > Terry, > I would also like to know if your mother had stomach pain. My mother > always mentioned she had a low stomach pain or a urinary tract infection. > When she was hospitalized in November she had a complete gyn exam and > tests.....nothing was found.....yet she continued to perseverate on this... > > Suzanne > > ---------- > > From: Blblakeney@... > > To: cjdvoice (AT) onelist (DOT) com > > Subject: nvCJD > > Date: Monday, January 18, 1999 6:18 PM > > > > From: Blblakeney@... > > > > Hello Terry > > > > I am a little confused about your mother's diagnosis. You have stated > that > > your mother died of nvCJD, but all of the articles and conversation on > > cjdvoice say that there has been no cases of nvCJD in the U.S. Could you > > please enlighten me (in lower case). Did you mother have any stomach > > problem, or complain about a week stomach? > > > > Thank you > > > > Amy > > Blblakeney@... > > > > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
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