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 Husband newly diagnosed - How to Cope 
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Joined: Sun Oct 10, 2010 1:08 am
Posts: 7
Post Husband newly diagnosed - How to Cope
My husband of 35 years just received a tentative diagnosis of LBD from a neurologist. We were stunned, especially after reading all about it. I realize that the symptoms vary from person to person. I would like to seek a 2nd opinion from the university since we live near UCSF, to confirm the findings. Does anyone have any suggestions?

The most difficult part is telling our adult children, close friends, etc. I want to cry all the tme when I think about this. It is hard for him too. We have spent the last few days hugging, talking and trying to figure out what to do.

For this time, right now, I am so grateful. We have had the most loving, warm and very frank discussions. I look forward to any advice or suggestions and I am so glad to have found this board. Thank you.


Wed Oct 13, 2010 10:56 am

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Husband newly diagnosed - How to Cope
Dear Patty,
Welcome to the LBDA forums and I am so sorry for your need for them, I am sure others will chime in on getting that second opinion where you want to go.

It will take sometime to absord the DX and the best piece of advice I can give you is to educate yourself in this illness the best you can!

There is online support groups for spouses only: Please consider it:

Be sure and chek the website!

Irene Selak

Wed Oct 13, 2010 11:42 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Husband newly diagnosed - How to Cope
Patty -

UCSF as in UC San Francisco?

There are many fine physicians at UCSF's MAC -- see -- from Dr. Bruce Miller down. I coordinate a local LBD support group in the SF Bay Area; you are welcome to join. Our next caregiver support group meeting is in about 2 weeks. Please email me privately.

Keep in mind that it's very difficult to diagnosis LBD correctly. The accuracy of the diagnosis is less than one-third, according to a recent study.


Wed Oct 13, 2010 12:18 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Husband newly diagnosed - How to Cope
Hi Patty - welcome, and I am so sorry for your need to be here. There is a lot of info. here and lots of supportive people who know what you are going through, so I hope you come here often. Lynn

Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Wed Oct 13, 2010 3:05 pm

Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Husband newly diagnosed - How to Cope
Patty, Welcome, you'll find lots of support, suggestions and sometimes laughs. Frank was dx 5yrs and I wish we had spent some time talking about today, tomorrow and what if. Now we stay in the moment, life changes day to day, sometimes hour to hour. Try to enjoy everyday and do as much as you can. As Robin has reminded us all, it's not always possible to be sure of the DX, many other disease are so closely related with similar symptoms, we work with what we have.
Take Care, Gerry

Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.

Wed Oct 13, 2010 3:46 pm

Joined: Sun Oct 10, 2010 1:08 am
Posts: 7
Post Re: Husband newly diagnosed - How to Cope
Thank you all for the wonderful input. I will pursue all of the above and I look forward to sharing.
Hugs to all!

Wed Oct 13, 2010 6:55 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Husband newly diagnosed - How to Cope
Hugs to you, too, Patty! And welcome to the forum. You will also like the Caring Spouse forum Irene has mentioned. Maybe I'll see you there! God bless you!

Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Wed Oct 13, 2010 8:04 pm
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