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 From LBD to FTD and now to PDD. 
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: From LBD to FTD and now to PDD.
I have to echo Craig's statements - that is exactly how I feel as well...and when I am "sure I'm right" I really fight for it because I am so unsure about so many other things....Thanks for making me think about this because I am sure that is hard for my husband.....I fight harder for my opinion on certain things than I ever did in the past when I feel sure I'm right....that is because I feel so unsure about most other things.....sorry I think I just repeated myself! There's that verbal fluency thing I guess!

Thank you for helping bring this to my attention while I can still (maybe) control it (some moods and "rants" are hard to control these days) - I can be more flexible and open-minded even when I am absolutely sure I'm right! :P

Take care all,

Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Sat Aug 20, 2011 5:23 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: From LBD to FTD and now to PDD.
Tonya, looking at it from the CG's perspective, if I had a nickel for every time my mother has been absolutely convinced and adamant about something about which she was dead wrong, I could retire today.

For instance, this afternoon, she was totally convinced she had eaten her lunch (before I arrived), and even commented what a good lunch it had been. But the aides came around later to check as the dietary staff asked them about it because her tray came back to the kitchen totally untouched and dietary thought maybe she never got her tray.

This happens with increasing frequency. It is difficult to adjust to these situations. I don't argue but rather just play along with whatever she believes unless it is something that simply must be addressed.

Julianne


Sat Aug 20, 2011 5:44 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: From LBD to FTD and now to PDD.
Tonya, bless you for trying to make things easier for your husband. Yes, try to be aware of your need to be right while you can, but I think your husband will be better served if the two of you discuss this issue frankly. He needs to know why you are so adamant about some things, and he needs to know that this behavior may increase. It is not your fault and it is not his fault, it is just something you will need to work through. Discuss it when you are feeling particularly lucid and verbal. May your early stage while you are so self-aware last a long. long time. You can use some of this time to prepare for later stages.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sat Aug 20, 2011 6:12 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: From LBD to FTD and now to PDD.
Jeanne, Julianne, all,

Thank you for your suggestions!! We are so lucky to have your input!! I will do as you suggested...evenings aren't my best time, so I will discuss it with him in the morning....I didn't recognize that I was doing this until I read this thread - but I can see now that I have been - "difficult" at times :roll:

I want to do everything I can to make anything easier for my husband....I am so grateful to you all!!

Best wishes,

Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Sat Aug 20, 2011 9:34 pm
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Joined: Mon Mar 21, 2011 11:26 pm
Posts: 49
Location: St Pete Beach, FL
Post Re: From LBD to FTD and now to PDD.
So my father did the four hours of testing today. He survived, and it did not upset him too much. My sister and I were not allowed to be there when the testing took place, and he isn't able to tell us much it. He gets an MRI next week and then we go back to the Doctor for the results (they are calling it a "disclosure").


Mon Aug 22, 2011 4:01 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: From LBD to FTD and now to PDD.
Seferios,

I wish you all the best for your Father...I'm glad the testing wasn't too much for him today......

I wanted to add too, that I did talk with my husband about the "opinionated" thing....he said he already knew this and knew it could get worse and that he didn't take it personally and that he knew it wasn't my fault or his....I am so very grateful for him!!! I am so very lucky to have him as my husband!!! I never knew the day we married how lucky I would be one day.......he says he did!!! How lucky am I?????

I also thought more about all my emotions...they are not all bad....some that are exaggerated more than "before Lewy" are loving and meaningful...I feel things more deeply now - I experience music and the worlds beauty more deeply - sometimes it brings me to tears things are so beautiful....I can say things and express my love more freely now to my loved ones.....I can show it without reserve too....I guess it is really living.....in the here and now, and breathing in each moment of life and trying to make the most of it.....I don't know if that has anything to do at all with later stages, but my thinking is that many feelings, emotions, physical feelings are exaggerated by Lewy......just my thoughts.....

Thanks to all....each day that goes by, I admire all of you CG's more and more and hope against hope that the path will be made somehow easier for each of you and for my husband.....You all inspire me!! I want to do good for others with the good days I have left and you all give me an example......words don't do it justice...what you do.....such a gift you give...

Best,
Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Mon Aug 22, 2011 6:23 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 245
Post Re: From LBD to FTD and now to PDD.
Hi Tonya,
Thank you for the very perceptive comments - especially the thoughtful observation of a deepening appreciation for beauty and love. And Emanuel's comments on retaining a sense of humor. I notice both of these in my mother. She has always been a bright, competent, friendly person, but there is a kind of tenderness and sweetness that was not a striking presence when she was so busy, confident, and active in the world (true even well into her 90's, except maybe the last year or so.) She has, I think, set aside her need to make things perfect, a quest in which she was loving but diligent, and accepted much more the world and her family as unalloyed joys.

So here is something for those in need of a little smile:
Q: What do Alexander the Great and Winnie the Pooh have in common?



A: They have the same middle name!
(Dopey but we take our smiles where we can get them...)

Laurel

_________________
Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Mon Aug 22, 2011 8:12 pm
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Joined: Mon Mar 21, 2011 11:26 pm
Posts: 49
Location: St Pete Beach, FL
Post Re: From LBD to FTD and now to PDD.
Oh my goodness. We just got the results back today from my father's MRI and four-hour cognitive testing. (Again, we took him to the Byrd Alzheimer's and memory disorder clinic at the University of South Florida in Tampa.)

The results were not good. My father, essentially, has a combination of two and maybe three types of dementia. He for sure has LBD. The doctor says this is his primary dementia. He also has "significant vascular damage" in his subcortical brain, a result of uncontrolled diabetes. Then the doctor said it is likely he has Alzheimer's too, but this is unsure. His MRI showed severe atrophy of his cerebral cortex. The doctor said this is often seen with Alzheimers, though it can also be present in elderly people without dementia. The issue, he said, is that the atrophy is extremely severe. ("You could stick your finger inside the crevices in my father's cerebral cortex the spaces are so large.") He met my father, and he told me tonight that it was "incredible" my father was functioning to the level he is, given his MRI. He said that if he looked only at the MRI he would assume my father is in very late stage Alzheimers. He said my father is a complicated and unusual case.

I asked him why my father is not experiencing visual hallucinations, which are supposed to be the hallmark of LBD. He said "that's not always the case," and "he probably will begin experiencing visual hallucinations." (My father is currently experiencing delusions and paranoia.) The doctor said he is likely somewhere between late-moderate and early-severe stages of dementia. I said, "which kind of dementia? LBD?" He responded by saying, "in a case like your father's, the various dementias merge together."

He changed my father's medication. We are beginning tomorrow to ween him from Paxil and switch him to Celexa, because supposedly Paxil is anti-cholinergic and not good for his brain. We are weening *VERY SLOWLY* because supposedly it is hard to come off Paxil. Then in six weeks he will be starting Aricept and soon after that Namenda. If his delusions and behavior problems get worse, then he will start Seroquel.

I went to the doctor by myself. My father did not want to go and I think it was better that way. Afterwards, I went home and told my father that he actually does have "Lewy Body Disease." I also told him about his vascular damage from uncontrolled diabetes, because why not try one more time to get him to quit eating so much. I did not tell him about the severity of his diagnosis, nor do I think he understands that the "D" in LBD stands for "Dementia." I did tell him that the doctor is going to be prescribing him medication for his memory.

The doctor said I should expect my father to "deteriorate significantly over the next year." He said the delusions, paranoia and behavior problems will likely get worse.

I'm nervous about switching from Paxil to Celexa. The Paxil was really helping his mood. My father's behavior before the Paxil (about six months ago) was even worse than it is today, despite the progression of his multiple dementias. The doctor said that if it gets too bad, it's not a crime to put him back on the Paxil. If that's the only antidepressant that calms him and makes him happy, he would be fine with us putting him back on it.

This is all a lot to take in. I am going to sit with it for a few days. Thanks everyone for listening. I wish I had more time to read and respond to your posts. Lately I have been so busy with my father, his fiancial situation, his care situation, and my own wife and children in California. I haven't seen them in months, but I am going back for a visit this weekend.

Emanuel


Thu Sep 08, 2011 9:07 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.
I'm so sorry for all the bad news, Emmanuel. Can you move your dad back nearer to where you live? Leaving your own family doesn't sound like a very workable plan to me, especially for months at a time. I was able to leave my family and home for a week or two at a time every couple of weeks, but to leave for months? I wish I'd moved my dad when I first considered it because it is a strain on everyone to have to travel like I did and even worse, the amount of time you are away from your family.
I hope the med changes go as well as they can. Does the dr. think the memory drugs will actually help at this point?
I hope you are getting plenty of support and that you are taking care of you. The last thing you need is to get sick from all the stress. Sending a big hug, 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 Sep 08, 2011 10:05 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.
Emanuel,

Yes, this is a lot to take in. I hope you can get some respite soon, and get emotional support from family and friends.

I think you did the right thing to tell your dad he had "Lewy body disease." As for the diabetes/vascular dementia issue, I have doubts that a diet change now will have any effect. What about letting him continue eating as he has?

What about refusing to change from Paxil? Paxil is an SSRI. I have never heard that it (or any SSRI antidepressant) is anticholinergic.

Robin


Thu Sep 08, 2011 10:40 pm
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