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@wallema55

Linda
I remember vividly the day we first heard Lewy Body Dementia when my DW got her diagnosis about a year ago.. Like you I researched and found some alarming and awful things to expect. But as things settled a bit, I learned that evertone's journey is different and not every LBD person will have all the possible symptoms. And the severity of symptoms varies as well. My experience thus far has been pretty good all things considered. My wife, about the same age as our sister, still has a wonderful sense of humor. We laugh a lot, even at some of the frustrations of dealing with LBD. There are things she cannot do, but there are lots of things she can and enjoy.
A couple resources I found helpful were LBDA (Lewy Body Dementia Association) and the Lewy Body Canada websites. These are managed by people who have or are living the Lewy experience.
There others here on the Lewy journey who might share some of their experience.
Keeo singing those hymns and I am sure you will fing ways to bring joy to your sisiter.

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Replies to "Linda I remember vividly the day we first heard Lewy Body Dementia when my DW got..."

Your words are kind and hopeful. You have woven love so beautifully around your DW. I would write more as a reply but I'm just trying to hang on this morning. We tried to keep my sister awake half the night like the EEG appointment (scheduled for today 12/8)instructions said but it was hard. My son and husband stayed up with us, watching over me watching over her. Everybody is sleepy now! That's not great for navigating a hard day at clinic. She also has a PET scan. I'm concerned as to how she will get through these tests. She said yesterday that she feels like she's being manipulated about these medical details and the tests. And that was an angry time for her. I told her the doctor wants more information to help her best. She calmed down finally.
Her son was able to call and that helped her gain trust about the tests. It's just that every day things seem worse. Tomorrow we will start the Donzole.
Today.... The sun will rise and strength will be found.