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Joined: Thu Aug 19, 2010 10:03 am
Posts: 3
Location: Hampton, NH/The Villages, FL
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I am new to this site. Five years ago my husband was diagnosed with a non-specific degenerative brain disease. His problem was more with processing information than with memory. Because he started exhibiting Parkinson's symptoms last year, the doctors are now leaning toward LBD. He does not have delusions or hallucinations, but he did have severe nightmares a few years ago that stopped. He was forced to retire two years ago at the age of 62. I retired soon afterward to be with him at home. Does any of this sound familiar to any of you?


Thu Aug 19, 2010 10:09 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3125
Location: Vermont
Post Re: questions
Welcome, and sorry for your need to be here. My dad was "sort of" diagnosed with Park. last year, then had a huge decline, part of his symptoms were sundowning hallucinations and delusional thinking. He has since been diagnosed with almost a dozen other possible degenerative brain disorders. At first (before the huge decline) his noticeable cognitive symptoms were lack of empathy, inability to problem solve, and his linear thinking was way off. He forgot my and my youngest son's birthdays (totally not my former dad). He had started to have mobility issues a few years ago, but we thought that was related to his needing a hip replacement and finally having it done, but done too late. His shuffling probably started because of a degenerated hip, but after the surgery probably related more to the degenerative brain disorders. It is all so complicated, isn't it?
I hope you find some answers that will be helpful, and please come to the forum often. It is a great source of support and info. 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 19, 2010 10:19 am
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Joined: Thu Aug 19, 2010 10:03 am
Posts: 3
Location: Hampton, NH/The Villages, FL
Post Re: questions
Thank you, Lynn. I guess I am wondering if LBD is the right diagnosis. My husband has been relatively stable for the last five years. Granted it is obvious something is wrong, but people think he 1. he is just slow 2. he has had a stroke 3. he has Parkinsons. From what I read here, most LBD patients have a more rapid decline. I guess I just don't know what to expect.


Thu Aug 19, 2010 10:24 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3179
Location: WA
Post Re: questions
Welcome to the forum. We're always sad to have to welcome yet another victim of this awful disease but we are also very happy to have this forum. You will get much information, encouragement and support here. There is also a Yahoo forum for spouses of LBD which the moderator can direct you to. I find it a real lifeline.

Yes, my husband had much more difficulty with executive function and information processing than with memory and that is still the case, although his memory is also affected. His PD symptoms began around the same time as his cognitive difficulties. For over two years now he has had delusions and hallucinations. I hope your husband does not develop these features but he probably will. I hope he has a good, knowledgeable and understanding physician. One thing we have learned from the forums and from experience is that medications can do as much harm as good, especially in LBD, and care must be taken when introducing something new. There are good, helpful medications for LBD but they need to be carefully selected and monitored.

Hope things go smoothly for you and that your are taking time for yourself. I have two mornings off per week and it has kept me sane. God bless!

_________________
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 19, 2010 10:28 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: questions
tersul,
Yes, I can see why you are wondering if LBD is the right diagnosis. It doesn't sound like your husband has all of the symptoms. (I'm a layperson.) Diagnosing can be very challenging as there is typically more than one pathology in the brain.
Robin


Thu Aug 19, 2010 10:55 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: questions
tersul, My husband has a problem following directions, I have to repeat several times, sometimes it's as simple as sit down, or bring me the shirt. I guess as I'm writing it's more of a processing of what I said, IF he even heard the words or just heard a jumbled noise. He does hallucinate but it's usually harmless and capgras is a problem, he thinks there are 3 of me. He does have a hand tremor and freezing more and more but he's not on any parkinson meds. Good luck to you and your husband ENJOY the good days.
Take Care, Gerry

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


Thu Aug 19, 2010 2:36 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3125
Location: Vermont
Post Re: questions
It's really hard to get a diagnosis, and then, it isn't necessarily right! That makes it frustrating to try to treat symptoms, but just be careful with adding meds - as they say, go slowly, with low doses at first.
There probably isn't anything about LBD that's exactly the same for everyone. It does sound like lots of folks whose LOs have LBD notice big declines, but that isn't necessarily a defining symptom from what I can tell.
I'd give you one piece of advice, and that is to read through as much of the forum as you can, so you have some idea of what is likely to happen in the future so you can be prepared in case there is a huge decline. I was just so lucky that a few weeks before my dad's big decline I had convinced him to move into assisted living. He hadn't moved yet when he ended up in the hospital unable to perform almost all ADLs, including walking, sitting, feeding himself, etc. I was so glad we'd reserved an ALF room for him so he could move there when he got out of the hospital and rehab. I guess you could say he experienced a catastrophic decline. A couple of people in my CGs class had the same thing happen with their spouses. About the best you can do is be prepared so you aren't having to make big decisions in the midst of a crisis. I don't mean to sound so depressing, but the reality is that you never know what will happen and how fast it can change. All the best, 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 19, 2010 4:32 pm
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