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 Another Newby!! 
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Joined: Thu Aug 26, 2010 1:28 pm
Posts: 1
Post Another Newby!!
Yesterday, after a doctor's visit with a geriatric specialist in Denver, Colorado, the doctor told my mom and dad that he thinks my dad may have Lewy Body "Disorder." (that's what my mom told me) Is there a LB Disorder or is it just LB Dementia? Also, how often are people misdiagnosed as having LBD when it turns out to be something else? I can't image how having a dx of Alzheimer's would be any better. Within the next month, my dad will see a neuropsychologist then see his new dr again. At this point, I'm pretty overwhelmed with the possibility of LBD but also don't want to mentally go down that road in the event it's not LBD. Part of the reason I'm posting is also to begin to be able to talk about it in the event it really is LBD. Anyway, I'm confused, scared and hopefull all at the same time. I hope I'm making sense.

Thu Aug 26, 2010 1:52 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Another Newby!!
Welcome to the forum! You'll find lots of information and support here.

Your father's physician probably just chose not to use the term 'dementia'. It's the same disease, sometimes called Lewy Body Disease, Lewy Body Dementia or Dementia with Lewy Bodies. Only examination of the brain after death can, at this point, conclusively prove LBD but doctors use symptoms and sometimes responses to medications to arrive at the diagnosis. It's not a diagnosis he would likely have applied lightly.

Hope you can support your mother in dealing with this disease. It won't be easy for her. Best wishes for all of you in this ordeal.

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.

Thu Aug 26, 2010 2:06 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Another Newby!!
Hi again! Glad you were able to get on the forum so quickly! I'd suggest doing a lot of reading here. There's a lot of info. already posted, and you can either read down through the topics or do a search if you have specific questions. But, don't be afraid to ask. There are many, many supportive people here who have seen this through with their LOs or are still caring for LOs with LBD. Stop by often - and you might suggest it to your mom too. She is going to need all the support and info. she can get. Hugs, 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.

Thu Aug 26, 2010 2:31 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Another Newby!!
I agree that probably the MD didn't want to use the term "dementia" as in "Lewy body dementia."

There are several Lewy body disorders. The most common one is Parkinson's Disease. Second most common is Parkinson's Disease Dementia, which is considered a Lewy body dementia.

You might look at the diagnostic criteria for LBD (on to see if your father meets the criteria.

Thu Aug 26, 2010 3:54 pm

Joined: Mon Nov 23, 2009 12:01 am
Posts: 62
Location: Wake Forest
Post Re: Another Newby!!

Welcome to the forum. There is a lot of information here and wonderful people to connect with on your journey. Please feel free to PM or email me, if I can I am always willing to help. Keep in touch and let us know how everything goes with your Dad.


All I am, or can be, I owe to my angel mother. --Abraham Lincoln

Thu Aug 26, 2010 4:24 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Another Newby!!
Yet another welcome vcoming your way, sorry for the need but glad you are trying to figure this all out, lots of wonderful info here!

Irene Selak

Thu Aug 26, 2010 5:28 pm
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