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 new member from Arkansas 
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Joined: Mon Jun 21, 2010 2:24 pm
Posts: 32
Post new member from Arkansas
I am a new member to LBDA. My husband(68) has undiagnosed LBD. He has been diagnosed with dementia, due to a MRI of his brain last August.They were looking for infarction (stroke). He had marked weakness and confusion. This was the first time it had been this bad. These things had been happening for basically 2 years. Before that, he had been having periods of confusion, like, making the wrong change involving hundreds of dollars and some bad business decisions. Also has been acting out his dreams for at least 4 years prior to this occasion. Since August, the delusions and hallucinations have begun. He had a bad bump to the top of his head in June 09. I wonder if this is what started the decline? I guess what I feel most guilty about is that when he has "good" days, I tend to doubt that anything is really wrong. I feel like he is very high functioning Stage 2. Sometimes we go as long as 2 weeks without a major flair up. However he is always tired, and sleeps a minimum of 14 hours each day. He also falls a lot, but thank goodness nothing really bad. He has the stooped shoulders and is beginning to have the mask.He also has very toned leg muscles, and someone who has been in bed for basically 10 months should be losing muscle tone. Could this be the PD part? I was looking at pictures today and just realized how much he has changed in appearance. With the last flair up,today, I have had to hide all the keys to everything, including the lawn mower.From all the reading I have been doing on this website,(been reading since January) I am thankful for those "good days". His primary care MD doesnt want to talk much about this. And his neuro didnt say a word. I found out from the primary, almost by accident,because we kept telling him that something was wrong and no one had told us anything. He assumed the neuro had told us. To make a long story short, the primary says that a diagnosis is a death sentence. I want to get a diagnosis, so we can start some medications, therefore,does anyone know of any neuros in Little Rock Arkansas that is really on top of their game with LBD? The one we saw was more concerned with his diabetes. And he also has COPD (chronic bronchitis). Does this make it worse? So many questions, so much guilt.....Thanks for reading. I know I am long winded...

Mon Jul 12, 2010 11:21 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: new member from Arkansas
I'm very sorry to have to welcome you to this forum but you have come to the right place! I have gone through what you have. My first advice would be to get a medical and legal POA signed if you haven't already. Once your husband is more progressed he will be legally incompetent to make that designation. You will need to make sure he doesn't drive. A recent thread here explains various strategies for this. It is difficult, along with everything else about this disease. Read as much as you have time to read of the forum to date. There is also a private Caring Spouse LBD forum that perhaps the moderator will direct you to. It is more personal in nature but this forum is more informative.

God bless you in your battle, for it is a battle we are waging. Be assured that we care! --Pat

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 Jul 13, 2010 12:41 am

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: new member from Arkansas
I could certainly understand an MD being more concerned about someone's diabetes but then maybe the MD isn't aware of what struggles the family is going through in dealing with dementia.

I suggest you say to the primary care physician that you want your father's symptoms of RBD, dementia, and psychosis treated...that the diagnosis doesn't matter.

Hopefully we can find a neurologist recommendation for you. Did you do a search of past posts to see if anyone had mentioned "Arkansas" or "Little Rock"?

Tue Jul 13, 2010 12:45 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: new member from Arkansas
Hi, and so sorry for your need to be here. It is a very tough thing you are dealing with and I hope you feel as much support from this forum as I have. I know it's hard, for women especially, but try not to lay guilt trips on yourself - it only makes you more emotionally exhausted.
I hope you are able to find a good dr. with whom you can establish a good rapport. That will probably help you a great deal as you do the best you can with a very challenging situation. Take care and I hope you "visit" 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.

Tue Jul 13, 2010 9:49 pm
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