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 dad recently diagnosed 
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: dad recently diagnosed
I would like to welcome you to the LBDA forums, sorry for your need but glad that you found us !

Irene Selak

Sun Dec 11, 2011 7:41 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 349
Post Re: dad recently diagnosed
Oh, Terry, I am so sorry you have to deal with this.
A gentle approach may calm your dad and reminding him that you will help him whenever you can.
My husband's neurologist, an LBD specialist, recently told me that his experience with newly diagnosed LBD patients who are having very bad symptoms is most often caused by a wrong medication that triggers or exacerbates problems. Perhaps this information may be helpful to you as you make your visit. A search on this forum about bad LBD medications may give you a bit more detail before you make your trip.
My prayers are with you as you go.
Pat, also from NC

Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url][/url]

Sun Dec 11, 2011 9:53 pm

Joined: Thu Dec 08, 2011 5:24 pm
Posts: 12
Post Re: dad recently diagnosed
Dad has started eating a little. Last night he woke up and told my sister that he has felt like he has been in a dream for awhile and kept saying his mind was just gone. He talked about seeing some family members that came and saw him a few days prior. He didn't know them when they were there but know he recalls seeing them now. He also asked about me and my kids, said he wanted to see us all! Is this typical of Lewy? The neurologist told us that last week he was thinking we should look into hospice care but he says now he has seen improvement and we need to look at SNF. My sister hopes that this was meds and maybe no Lewy? I am skeptical, I want to have hope but I also need to be realistic. He also keeps talking about being a play. Does all this sound like Lewy?

Tue Dec 13, 2011 10:13 am

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: dad recently diagnosed
Terry, it is not uncommon to have episodes of severe debility in LBD followed by rebounds to baseline. This happened to my husband several times. I'm sure you have already read the symptoms of LBD listed on this page: Only time and your father's physicians will be able to determine a diagnosis. And, as has been reported, postmortem brain autopsies often reveal incorrect diagnoses, anyway.

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.

Tue Dec 13, 2011 10:35 am

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 781
Location: LA
Post Re: dad recently diagnosed
Terry, My husband, Mr Bobby, often experienced delayed memory such as you describe. Strange. Yes, he did have LBD identified post-mortem by Jacksonville, Mayo.


Tue Dec 13, 2011 5:08 pm

Joined: Mon Dec 12, 2011 3:46 pm
Posts: 19
Post Re: dad recently diagnosed
My Dad was diagnosed with LBD 1 1/2 years ago... he was sent to respute for 30 days (to relieve my poor Mum). She cared for him 24 hours a day since 3 months after his dx. Very rapid onset. 5 days into his respite, around December 2nd, the care centre sent him to emergency where he stayed until being taken into Acute Care. He was assigned another neuropsychiatrist and we now have a proper case worker... Thank Goodness. But Dad probably lost a year or two just from the emerg stay because he was not up out of bed for 3.5 days - which is what they do here. Very sad - 3 weeks ago - socially engaged and ambulatory - though he could no longer be left alone. Now, still in the hospital - and we have been told he will be there for another 3 weeks perhaps. He was scared and confused... We are now simply just looking to "stabilize" him before moving him into a care home... So to answer your question, though it is heartbreaking, my experience has been that once they hit the hospital once or twice LBD'ers do decline. The chaos and confusion, I believe, contribute.

And no, my Dad will not be the same at all as he was 3 weeks ago today... 3 weeks ago we believed he would be home for Christmas and that we would have some in home help - now here we are - he is in a wheel chair - and though he has improved since Emerg. he will never be the same. I have been visiting him twice a day to ensure he eats at least 2 meals. Also, I know one day very soon he will not know who I am and so want to let him light up with delight when he sees me as long as possible... He eats very well and talks up a storm - but we barely understand anything he says anymore because his sentences can no longer be formed properly.

Not sure if I answered your posting or not... but in my experience, have found that LBD'ers love action and socializing even though their answers or conversations, at some point, are hard to discern by us. But they love touch and being fed and treats (my Dad giggles when I pull out the chocolate milk I buy him) and that, right now, is worth the world to me. Because I know this disease is taking my Daddy away...

Sun Dec 18, 2011 7:41 pm
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