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 The part we play 
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 781
Location: LA
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Post The part we play
For some of you who have been on this forum you will read what I am about to talk about and wonder why I am repeating myself. For one reason, I've reached the age of 92 so I'm allowed to be a little eccentric [smile] and another this is for the new caregivers who do not realize the importance of keeping records: Journals and such reports to give to their doctors. We are used to our fantastic medical people knowing so much; and they do; however, as I have said before, "We are the first generation to have the experience of doctors actually, finally accepting the fact that Lewy Body Dementia is a medical condition in and of itself". It is not Parkinson! It is not Alzheimer ! or any of the other disorders.

Lewy Body can be properly diagnosed post mortem. Progress has been made in the past few years toward making a clinical diagnosis but many of us cannot travel the distance to the large Centers where that research is being done. When there, the studies are done with observations, blood work, and wonderful machinery. The thing lacking in the Labs has been mentioned on this forum time and time again, We know how they are day in and day out, night and day.. Observations of the living behavior leading up to this strange and unusual condition.

Our homes have become the important missing link in diagnosing Lewy Body. Doctors are beginning to listen as we tell our stories. That never happened before our generation and it has been a slow pathway. It is still not always accepted but those who do are able to then know the medicines which are unique toward helping our loved ones live longer lives with us, the family who loves them. It has been found that each patient can react differently when taking a medicine, for example, today someone mentioned aricept as being the medicine that helped. With my husband, M B., it was Seroquel. Aricept made him cry. But through all the research being done, doctors now have a choice, if one does not give the desired help, there is another that can be tried.

Yes, our homes and lives have become the added Labs. Our work is significant. Our loved ones cannot help themselves so we must advocate for them and speak up when necessary. The information is printed on the Home Pages of this Association. We need to continue to study and be prepared to report the behavior of our own in our Home Lab. We will find that our loved ones will not go for years without help. Dorthea

"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.

Thu Nov 06, 2014 11:25 pm

Joined: Wed Oct 01, 2014 1:49 pm
Posts: 120
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Post Re: The part we play
I can't believe u are 92, that is wonderful. It sounds like you are up on all the latest news in LBD. I know your husband cherished you and respected you very much. Sounds like the lord has been at your side. PaulaL

Thu Nov 06, 2014 11:59 pm

Joined: Sat May 25, 2013 3:53 pm
Posts: 330
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Post Re: The part we play
Thanks for posting and staying a part of this Dorthea! Your insight is invaluable!!

Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.

Mon Nov 10, 2014 6:53 pm
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