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 From LBD to FTD and now to PDD. 
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Joined: Mon Mar 21, 2011 11:26 pm
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Location: St Pete Beach, FL
Post From LBD to FTD and now to PDD.
What a roller coaster ride we are on here! First my father was diagnosed with Lewey Body Dementia, then it was changed to Frontotemporal Dementia, and now it's Parkinson's Disease Dementia. This time, however, I am 99% confident the diagnosis is correct. He has virtually every symptom described on this page for late-stage Parkinson's, including the delusions and (a few) mild hallucinations.

http://www.hopkinsmedicine.org/neurolog ... sease.html

So Parkinson's is a the Lewy body disease, and I guess the Lewy bodies have spread beyond the areas of my father's brain where the motor neurons exist to the areas of cognition also.

We are still now left with the difficult decision of whether to try medications. My father's paranoia and delusions are bad. (He recently accused me of having an affair with his ex-wife and one of his caregivers.) Drugs that help with the motor problems supposedly exacerbate the delusions, and the drugs that help with the delusions exacerbate the motor problems. So far his neurologist has not prescribed anything. But things are getting very difficult at this point. I feel like trying something just to see.

Emanuel


Sun Aug 14, 2011 9:47 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: From LBD to FTD and now to PDD.
Emmanuel - I really feel for you. My dad also had numerous possible diagnoses and the meds that helped his cognition made him very aggitated and aggressive. All I can say is tell his drs. to go slowly with adding new meds so you can see how he reacts. If you are lucky, they will find something that will help and not create side effects that cancel out the positives.
However, don't get your hopes up that there will be a "magic bullet". Unfortunately for some of our LOs there is nothing that will help them, but if you haven't tried a few things, you might as well go for it and see if he can be helped through new meds. Just don't let them add or change more than 1 at a time so you can tell which is having what effect. Good luck and hang in there. This is a very difficult thing to deal with. Lynn

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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.


Sun Aug 14, 2011 9:59 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: From LBD, FTD and now to PDD.
Emanuel, my husband has also had to endure the medication 'trade-offs' you describe. It's a tightrope we continue to walk. You can enhance mobility and worsen delusions and hallucinations or you can sacrifice mobility to keep the psychotic symptoms down. In my husband's case we have leaned toward greater mobility, more efficient swallowing and less drooling by keeping his Sinemet level high. He is no longer able to walk or stand but his upper body is still fairly functional and he is eating quite well with assistance.

_________________
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.


Sun Aug 14, 2011 11:24 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: From LBD to FTD and now to PDD.
Emanuel,

As you may know, Parkinson's Disease Dementia and Lewy Body Dementia are the same thing. This is one of the best explanations I've ever read: "I guess the Lewy bodies have spread beyond the areas of my father's brain where the motor neurons exist to the areas of cognition also." When the Lewy bodies are diffuse throughout the brain (including the cortical regions), then this is PDD or LBD.

The best explanation I've seen of the "motor - mind" balance is the NPF booklet "Mind, Mood & Memory" (see parkinson.org).

Good luck,
Robin


Sun Aug 14, 2011 9:25 pm
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Joined: Mon Mar 21, 2011 11:26 pm
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Location: St Pete Beach, FL
Post Re: From LBD to FTD and now to PDD.
Thanks everyone. We just took my fatehr to the Byrd Institute at the University of South Florida (http://health.usf.edu/nocms/byrd/) where he had his first meeting with a geriatric psychiatrist (Dr. Estevez). Monday he goes back for four hours of testing, and the doctor also ordered an MRI and blood work. My sister and I feel very confident in this doctor and the institute. After the interview with us and seeing my father (and giving him a few tests.. I think it was the mini memory test or something by that name), Dr. Estevez told us that my father's case seems "very complicated," that it was not a straightforward case of PDD. He said, "there is clearly frontal lobe stuff going on along with the PDD, and I suspect vascular dementia too, and possibly even a bit of Alzheimers. Despite the lack of straightforwardness, it seemed a milestone just to be with a doctor who has experience and is an expert in this field. Maybe after the big day of testing and the brain scan we will get a more straightforward diagnosis, or the doctor says maybe it will still be ambiguous. Either way, we will have done everything we can to pin this down.

One thing that happened that made my sister and both start crying is when the doctor drew a circle and as asked our father to put the numbers of a clock on it and then draw the hands to make the time, "ten past eleven." He tried and tried for fifteen minutes and just could not do it. He got the numbers around the circle pretty well, but then he could not figure out how to draw 10 minutes past 11 no matter how hard he tried. We had never seen my father attempt this task before.

Another task the doctor had my father attempt was to copy this simple drawing of two overlapping shapes. It was a very simple drawing. My father, despite his best efforts, could not duplicate the shapes.

It was a very emotional moment for all of us. But one small positive thing that happened was that when left, our father finally acknowledged that he might be having some cognitive problems. Up to this point he has been in total denial of (or maybe he just could not recognize) his deficits. He believed he was going to the doctor to get a clean bill of health so he could get his drivers license back.

I will report back as he undergoes more tests and we get more information. Thanks for listening.

Emanuel


Fri Aug 19, 2011 7:07 pm
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Joined: Sun Aug 29, 2010 5:46 pm
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Post Re: From LBD to FTD and now to PDD.
Yes, the clock and the shape drawing I think are both part of the mini mental status exam (MMSE). There's another similar exam, the Montreal Cognitive Assessment (MoCA) and my mother has had them both, so I might be mixing them up, but I think they do about the same thing. Many of us know the feeling of watching a parent struggle with something that seems so elementary in those assessments. It is very sad!

I am sorry you had to go through that, but the silver lining is that you are happy with the doctor and, even bigger, your father has begun to recognize his cognitive problems. Personally, I think that is no small thing. I hope it will make him more cooperative with getting the help he needs.

Best of luck, and please let us know how things are going.

Julianne


Fri Aug 19, 2011 7:49 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: From LBD to FTD and now to PDD.
Emmanuel - I remember asking my dad to draw a clock with a certain time. I was shocked at how much he struggled, and then made the most amazingly inaccurate drawing. He thought he did a great job and looked at me with a big smile and said "how did I do?" I wanted to cry, but I just forced a smile back and said "you did a great job dad." It was heartbreaking. He refused to take the mini-mental and other tests so they had to sneak the questions in when he went for a dr. appt. in between other parts of the conversation.
For the sake of everyone else on the road, I sure hope your dad didn't get his drivers license back! 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.


Fri Aug 19, 2011 9:19 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: From LBD to FTD and now to PDD.
Will your father be willing to return for more testing if it's only going to prove to everyone that he has cognitive issues? Did he remember he was there with the thought to get his driver's license back?

It might be worthwhile to weigh the pros/cons of continuing the testing. If there's that much uncertainty about the clinical diagnosis (which is not even a definitive diagnosis), what is the point?


Fri Aug 19, 2011 11:30 pm
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Post Re: From LBD to FTD and now to PDD.
I'm not sure what Frank knows or can do as far as any of those tests go. I don't think he can read at all any more. I use to leave a note on the counter, "I WENT TO CURVES" and a few months ago I ask if he knew what it said and he struggled trying to figure it out, I don't ask any more. I do ask if he remembers some of his friends because they call to see how he is and one resently died. I usually have to repeat 5-6 times and I don't always get a reply??????? I don't want to make him feel bad, although he doesn't seem to have any emotions. :cry:
Take Care,
Gerry

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


Sat Aug 20, 2011 7:45 am
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Joined: Mon Mar 21, 2011 11:26 pm
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Location: St Pete Beach, FL
Post Re: From LBD to FTD and now to PDD.
Thank you again everyone. It's good to read other people's stories. I have just recently (maybe the last month or two) gotten to the point where I decide on occasion not to say something to him because I know he's not going to understand and I will have to repeat it a number of times and then he'll forget most likely anyway. I try mostly to just maximize his sense of humor. He has always had a good sense of humor, and he still laughs at one-liner jokes, and it's good to see him laughing. Sometimes I think he might laugh even when he's not completely understanding the joke, which is fine. :)

Robin, you bring up a good point. My sister and I discussed this and we think while the tests will very likely frustrate him, the pros at this point outweigh the cons. We've been trying to get a diagnosis/treatment plan for six months now, and feel it's long overdue. Even if things end up ambiguous afterwards, we will have at least tried. Plus the doctor says their team "is very good at the behavioral side" of patients, and my father has very problematic behaviors. So even if there ends up no good medication plan, the tests may help the doctor provide us with a behavior management plan. I don't even know what these 4-hour tests are, to be honest. I just know the doctor ordered them. He did ask us, "do yo think your father will be able to handle testing for that long?" Perhaps he was suggesting that if not, it would be ok to skip them. I didn't think of that at the time, but really I think my father will tolerate it. The other important thing is, as I mentioned before, that the tests might reinforce to him that he does, in fact, have problems. We think the more he accepts his cognitive deficits, the more he will get along with his daytime caregivers and stop accusing my sister and I have trying to steal his life from him. It's very difficult when you are doing everything you can for your father and he blames you for taking away his life. Yesterday when he finally realized because of the clock drawing test that he was suffering from some problems, we told him, "That's right dad. That's why we are taking you to these doctors, to try to get you some help." For the first time he said, "I know that." It was a moment of appreciation my sister and I have never had, despite all the sacrifices we are making to help him. A friend of mine who took care of his ailing grandmother in his own home for 9 years, however, told me I shouldn't become attached to that moment, because, "he is going to forget it and will likely start accusing you again." I don't want to believe that but maybe he is right. What a strange world where we lose the appreciation of those we love and help. All this has reinforced my faith in God. Love others without expectation of reward.

Emanuel


Sat Aug 20, 2011 8:11 am
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Location: SF Bay Area (Northern CA)
Post Re: From LBD to FTD and now to PDD.
I don't think 4 hours of neuropsychological testing is needed to identify behaviors that need to be managed.

You might ask the MD if your father's insight into his condition is likely to continue or grow. Typically those with frontal lobe problems are not capable of sustained insight.

There are several good discussions elsewhere on the Forum as to whether it's important for the person with a neurodegenerative disorder to "accept" he/she has a disorder. There is an entire school of thought within psychology that this diminishes the person with a disorder. (See http://deeperintothesoul.org/)


Sat Aug 20, 2011 9:20 am
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Location: Vermont
Post Re: From LBD to FTD and now to PDD.
My dad never really accepted that there was anything wrong with him either, so I guess I'm saying "don't get your hopes up." Trying to get them to accept their situation is not very likely to happen if you read the postings here and/or know people in support groups. My dad knew he could no longer do physical things but cognitively he never understood that he wasn't his normal self.
If you haven't done so already, you may want to read through many of the postings here. You'll see that there are a number of CGs whose LOs have accused them of infidelity, stealing money, etc., etc. I never had those things to deal with, for which I am very thankful, but at least you'll know that you aren't alone in dealing with these difficult issues. Take care, 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.


Sat Aug 20, 2011 11:16 am
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Joined: Tue Mar 29, 2011 3:02 pm
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Location: East TN
Post Re: From LBD to FTD and now to PDD.
just a thought…

as long as the brain is working to verbalize, acknlowledge or not, accomplish anything…it is working for its owner….

I can acknowledge certain things that are in defiecit…..fluctuating verbal communication, short term memory, inability to juggle multiple abstract thoughts and few other things….(only because these are so obvious and measureable for both you and me)

I still think I am the best there is in some other things…(and in some things…that 'is' still true)

I believe that is the brain's job….

that makes it tough for you guys….

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Sat Aug 20, 2011 1:20 pm
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Joined: Sun Aug 29, 2010 5:46 pm
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Post Re: From LBD to FTD and now to PDD.
All my mother understands is that her memory is failing. She does not grasp the cognitive issues. There is always some other reason for her inability to function cognitively, e.g., any electronic or mechanical device she can no longer operate is "broken." Maybe this is for the best. The truth might be too overwhelming.

Julianne


Sat Aug 20, 2011 1:22 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Post Re: From LBD to FTD and now to PDD.
Gerry wrote:
I'm not sure what Frank knows or can do as far as any of those tests go. I don't think he can read at all any more. I use to leave a note on the counter, "I WENT TO CURVES" and a few months ago I ask if he knew what it said and he struggled trying to figure it out, I don't ask any more. I do ask if he remembers some of his friends because they call to see how he is and one resently died. I usually have to repeat 5-6 times and I don't always get a reply??????? I don't want to make him feel bad, although he doesn't seem to have any emotions. :cry:
Take Care,
Gerry

Gerry, if I had seen that note a year ago I wouldn't have understood it, either. :lol: At face value, it doesn't make sense. Found out recently that 'Curves' is some kind of women's gym, right?

_________________
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.


Sat Aug 20, 2011 2:49 pm
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