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 My wife is tentatively diagnosed with LBD 
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 318
Location: southern cali
Post Re: My wife is tentatively diagnosed with LBD
welcome and so sorry for your need to be here...

as you read past posts you will notice. a lot of our loved ones have gone for along time before getting the diagnoses of lewy body...

also many do not want to know about the diagnoses..or the future.. not sure why.. but it seems to happen more, than not

so glad you found this site.. there is so much information.. it so helpful to learn, as much as you can.... in the beginning i just lived on here just finding as much info as i could.... it sure helped when i went to the doctors with hubby.... i understood what he was talking about and could ask better questions...
wishing you and your wife the best of luck, thru this journey...

sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..

Fri Oct 19, 2012 7:40 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: My wife is tentatively diagnosed with LBD
Just want to welcome you to the LBDA forums and I am sorry for you need and I hope you find this a p;lace of comfort and friendships !

Irene Selak

Fri Oct 19, 2012 8:13 pm
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Joined: Tue Apr 24, 2007 1:09 pm
Posts: 43
Location: Alberta, Canada
Post Re: My wife is tentatively diagnosed with LBD

Welcome to the forum. You'll find support, understanding and a lot of knowledge here. I'm sorry you need to be here, but know that you're not alone.

I found that becoming my own specialist in LBD was the most beneficial thing I could do for both my mother and myself. The more knowledge you can share about LBD with others, the better your wife's needs can be met. Doctors and nurses can't know everything about every disease out there; I found some were actually grateful for the knowledge that I had developed.

Your wife may not be able to process the information regarding Lewy right now. I found it was more important that I understood the diagnosis than my mother. Then, when things happened that were definitely Lewy related, I could tell mom that what she was experiencing was the effects of Lewy. Although she had all the information in front of her about Lewy, she couldn't actually process it until she was experiencing it and it was identified for her. She found this to ease a lot of her anxiety, as she couldn't understand why she was unable to do everyday things that she had always done before. So, we would just blame that "damn Lewy" and that would de-personalize it, and lessen her anxiety.

Come here often for support, education, and the occasional laugh.


Mon Oct 22, 2012 11:42 pm

Joined: Fri Apr 06, 2012 10:19 pm
Posts: 27
Post Re: My wife is tentatively diagnosed with LBD
Hi, so sorry that you need to be here especially at such a young age.
I bought a book called a Caregivers Guide to Lewy Body Dementia by Helen and James Whitworth. I learnt so much from the book and I took it to Dad's neurologist when I last visited as I seem to know more about Lewy than she does and she asked me to order a copy for her. I really recommend it if you haven't got it already.

Wed Oct 24, 2012 7:53 am
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