Guest guest Posted January 5, 1999 Report Share Posted January 5, 1999 I have been very slow in introducing myself, so I was glad for the reminder, Cindy. My name is Barb, and I live in Wisconsin, not far from the Milwaukee area. The husband of our best couple friends was fine in October and is now in a vegetative state. He was at two different hospitals until finally his wife took him to Mayo Clinic. They sent him home with a " probably CJD " diagnosis. My cousin did some research for me, and found out about Liz. Contact with Liz, Pat, Candy, and especially Dolly has kept me sane through all this. I am finding the medical field to be very unaware of CJD. I have learned more from the founders of CJD voice than from anywhere else. No one seems to want to believe Jim could have this. The symptoms Jim is demonstrating lead me to believe he could have nothing else. Deterioration has been almost instantaneous. At this point, the hospital is quite sure they will be sending Jim home on Friday. My husband will be taking classes tomorrow to assist his wife with the home care. Many of Jim's friends are willing to help, so there will be a schedule assuring Pam she will not be alone at any time. She will have companionship day and night, once he comes home. Dolly has been fantastic with her suggestions, warnings and advice. I am relieved someone is addressing this disease, and when this is over, you can be sure my big mouth will be making a lot of noise with the doctors and nurses I know personally. I intend to do some writing about this terrible disease and what it does to a family and loved ones. Just because the medical field wants to believe it is rare, doesn't diminish the fact that info about this disease needs to be publicized. I am extremely grateful for the support I have had in the last two weeks from members of CJD. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 1999 Report Share Posted January 5, 1999 Barb: My mother just passed away on December 9th from CJD. My sympathies to you and your friends. If I can help you please let me know. My mother deterioriated very quickly from October 21 to December 9th. At 08:18 PM 1/5/99 EST, you wrote: >From: Mcbarb3@... > >I have been very slow in introducing myself, so I was glad for the reminder, >Cindy. My name is Barb, and I live in Wisconsin, not far from the Milwaukee >area. The husband of our best couple friends was fine in October and is now >in a vegetative state. He was at two different hospitals until finally his >wife took him to Mayo Clinic. They sent him home with a " probably CJD " >diagnosis. My cousin did some research for me, and found out about Liz. >Contact with Liz, Pat, Candy, and especially Dolly has kept me sane through >all this. > >I am finding the medical field to be very unaware of CJD. I have learned more >from the founders of CJD voice than from anywhere else. No one seems to want >to believe Jim could have this. The symptoms Jim is demonstrating lead me to >believe he could have nothing else. Deterioration has been almost >instantaneous. > >At this point, the hospital is quite sure they will be sending Jim home on >Friday. My husband will be taking classes tomorrow to assist his wife with >the home care. Many of Jim's friends are willing to help, so there will be a >schedule assuring Pam she will not be alone at any time. She will have >companionship day and night, once he comes home. Dolly has been fantastic >with her suggestions, warnings and advice. I am relieved someone is >addressing this disease, and when this is over, you can be sure my big mouth >will be making a lot of noise with the doctors and nurses I know personally. >I intend to do some writing about this terrible disease and what it does to a >family and loved ones. Just because the medical field wants to believe it is >rare, doesn't diminish the fact that info about this disease needs to be >publicized. > >I am extremely grateful for the support I have had in the last two weeks from >members of CJD. > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
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