Connect
← Return to New Expert Blog: Dementia Hub & Lewy Body Event
Discussion
New Expert Blog: Dementia Hub & Lewy Body Event
Caregivers: Dementia | Last Active: Jan 21, 2022 | Replies (5)Comment receiving replies
@arlenephoto @scampbell0163 @adv @sarah49 @jaybergerpt @virginianaeve @dianajane @tunes @providence1960 @debbraw @hopeful33250 @IndianaScott
I wanted to make sure that you were all aware of this new blog and in particular to the online event (free) hosted by Mayo Clinic on May 3.
- Lewy Body Dementia Knowledge & Support Summit https://connect.mayoclinic.org/event/lewy-body-dementia-knowledge-support-summit/
The summit organizers want to know what questions you'd like speakers to address during the summit. Post your responses here:
- Lewy Body Dementia - What are your questions? https://connect.mayoclinic.org/blog/dementia-hub/newsfeed-post/lewy-body-dementia-what-are-your-questions/
Replies to "@arlenephoto @scampbell0163 @adv @sarah49 @jaybergerpt @virginianaeve @dianajane @tunes @providence1960 @debbraw @hopeful33250 @IndianaScott I wanted to make..."
All my test results point to LBD and CJD.. But there are days that I still can't believe and or accept the diagnosis. How dide it happen... no cure.. just wait everyday for the bottom to fall out our lives..zi keep searching for new medical facilities that will see me to maybe find an error or something new to search out. If this is a rare disease (both) then one would think someplace would atleast give me the chance to be seen. ! to 1 1/2 years out is just unacceptable to me atleast. I would go to the ends of the earth to be seen. Day by day... no you cant do that.. you might fall.. you have to slow down.. and on and on and on.. Any medds out there that anyone has tried or that thier trying that might help change things? DAY BY DAY..
Connect
@colleenyoung Thank you for including me. Yes I have been aware. My dear husband passed away on Jan3rd this year. I'm still in limbo. But I do read all Mayo connect. Perhaps I will have some worthwhile comments. Hugs to all.