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 Treatment Changes Since LBD Diagnosis 
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Joined: Thu May 14, 2009 11:19 pm
Posts: 28
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Post Treatment Changes Since LBD Diagnosis
I need some help. This whole situation is like reading tea leaves without a guide. It seems to me like there has been a major shift.

Since my husband was diagnosed with LBD, I have noticed a change in the doctors' approach. The neurologist is now becoming more active (set next appointment in 4 weeks instead of setting the next appointment for 6 months). In contrast, the psychiatrist who has been seeing my husband every month scheduled the next visit for 8 weeks from now.

A little more context is probably needed. My husband's resting blood pressure and pulse dropped significantly 4 weeks ago. He has started retaining fluids more than usual, partly because he's not emptying his bladder and partly because he's not drinking enough (he forgets to drink) - odd that it makes him hold more fluids. Also, his liver tests were high (2 times as high as normal).

The nuclear stress test and echocardiogram both show that his heart is the same as it was 2 years ago so the changes are not due to his heart. It is, of course, the LBD. The cardiologist took my husband off of his blood pressure medicine.

Today, the neurologist took my husband off of Vytorin and almost all of the supplements that I have been giving him, including the Fish Oil, Garlique, Move Free (stuff to help his bones), Vitamin D, and Vitamin E.

The person from UTSW said my husband is on the "moderate severe" border.

He is having 19-23 hypopneas an hour with a VPAP. His oxygen levels on the VPAP without the oxygen machine falls to 78%.

My mind just keeps analyzing the situation and trying to figure out where we are in the process. Can you help me? I see so many things happening with my husband on a daily basis. Little things and big things. He's now starting to forget the date even after he was told a couple of minutes before ... not all the time, but it is becoming noticeable. Now, he often forgets to flush the toilet. He's misunderstanding my questions and reading road signs and telling me about the traffic situations more (for example, reading the "left turn only" sign or telling me people are stopping ahead in 5 o'clock traffic - duh!).

Any guidance out there?

May God hold you in the palm of His hand and shelter you in the light of His love.

Wed Jun 03, 2009 12:43 am

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Daily changes -- big and little -- are part of LBD. It's all part of the rollercoaster ride...

Wed Jun 03, 2009 12:52 am

Joined: Tue Apr 24, 2007 1:09 pm
Posts: 43
Location: Alberta, Canada
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Robin's's a LONG rollercoaster ride....but everyday it's a different rollercoaster, so you can't predict what's next.

Oh, the road signs.....I thought I was that only one dealing with that!! Although mom can't read a book anymore, the minute she gets into my car, she reads every sign, every licence plate, every truck side that's in sight. I never know what she's talking about half the time, because I'm too busy driving to see the signs she's reading. It's almost like she's trying to prove to herself that she can still read SOMETHING. I just thank goodness that she can't drive anymore....she over-reacts and anticipates disaster everytime something unexpected happens in traffic.

I've turned it into a game with we drive past a familiar sign each time I take her home, I try to predict when she'll read that same sign.....before we get to the bridge?...half-way across the bridge?....and when will she say "I've never seen that sign before?" I've got it pretty well timed out now, and can say it before she reads it....That part of the rollercoaster ride is predictable!


Wed Jun 03, 2009 11:58 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Sadly this is all part of it, sometimes we can only live for the day and not a moment beyond it as this illness changes can be almost daily. The one thing I can say , for us the changes seemed more of a constant changing earlier on as time went on they seemed to settle down a bit. Good Luck!

Irene Selak

Thu Jun 04, 2009 8:59 am
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