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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Non-Verbal?
BC, your experience at work sounds very reminiscent of Dr. Graboys who continued his cardiology practice quite some time after Lewy struck. His nurse was the one who finally called him on the carpet about his deficiencies. And even then he tried to hang on to his practice. It was what he had lived his whole life for and it defined him.

Even though my husband retired nearly twenty years ago most of his broken thoughts seem to revolve around his work as a research chemist.

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 Apr 09, 2011 1:01 am

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Non-Verbal?

Being pretty verbal myself, I think the loss of control of speech would be a very scary symptom for me, probably worse than some of the physical symptoms. I'm sure that every adult has had times when we've lost our train of thought or couldn't think of the word we meant, so we know what that is like. But these are passing events that happen rarely. To have them happen frequently to the point of seriously interfering with communication would be very frustrating and sad indeed.

You seem to be able to express yourself well in writing. Is that a good option for you at this time? For example, do emails and internet chats work better for you than phone calls?

When you are having trouble thinking of a word or finishing a thought, do you want the person you are talking to to try to fill it in, or suggest the end of the sentence? Or is that annoying? You can see how much caregivers want to do the right thing, and how hard it is for us to know what that is sometimes.

Out of the long list of possible symptoms, no one gets all of them. It is really interesting to me that there doesn't seem to be a corelation between previous skills and symptoms. For example, if anyone has strong visiospatial skills it is a mechanical engineer. If I asked my husband, "how wide is this ribbon?" he'd glance at it and say 5/32 inches - and he'd be right! I always had him select containers for leftovers because he could judge volume so accurately. And yet when Lewy first hit him he could not figure out how to enter the bed so that he fit between the headboard and footboard! He had no concept of where he had to sit so that his head would reach the pillow when he reclined.

Not everyone with lbd has problems finding words. But it doesn't seem to matter whether you had a huge vocabulary or a small one, whether you were very verbal or less talkative. Lewy does what Lewy is going to do, without respect to previous abilities.

Hang in there, BC.

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 Apr 09, 2011 1:49 am

Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Non-Verbal?
I used to be able to write...long....flowing...convincing stuff...I used to justify why I killed l projects with my writing...

I can’t stand to see long flowing anymore. Long paragraphs with only single periods, or commas, are difficult for me to view. If a paragraph has more than 3 or 4 sentences stacked on top of each other, I probably won’t read the whole paragraph most of the time. I want to break up this paragraph. It is becoming overwhelmeing to just look at, and I just wrote it. I don’t want to think about trying to keep this size chuck of information in my ‘holding’ area as one thought. The temptation to break this up with multiple periods is becoming increasing hard to resist. I want to break it up or scream...

I need things broken into small chunks for best comprehension.

I love to tell stories...or I guess I used to...I guest - co - host on a local radio station on a saturday morning real estate program with a friend...I haven’t been on the show in a was getting harder to get through the show without messing up ‘show time’...I am going to drop in for a few minutes for this morning show...

I like to attempt to say what I want to say, before anyone attempts to help...I don’t mind if I look at you for help...and then you help...

I have to say...I don’t like being talked is one of the hardest things with my wife right now....she was used to talking quite a bit...I would prefer if she would slow down and not talk as actually wears me out...if I try to keep up with her regular speed and volume of talkings and the number of things she covers in a wears me is like going to the wasn’t like this 4 years ago...

I could listen to her, work on the computer and watch TV all at the same time, and then answer her correctly every time she asked me a question, and then return to what I was doing without losing my wears me out thinking about it...

I can’t handle calls are still okay if there are no distractions, I plug in...I have ear buds with a inline mic

emails and writing on forums are okay....I can triple check it and go at my speed

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 Apr 09, 2011 2:55 am

Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Non-Verbal?
BC, Thank you for posting, Frank is much more advanced but I'm always trying to figure out what he is thinking. He talks very little and answers even less, which I find very frustration. I don't ask questions unless necessary. If I ask if he has to go to the bathroom, he just walks away or says I don't know. Then he goes when I'm in another room, so there is a mess to clean up after. It's love that keeps us plugging along, even though it's a one sided love these days. A very sad way to end our years.

Again, I want to thank you for giving us this insight.

Take Care, Gerry

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

Sat Apr 09, 2011 6:54 am

Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Non-Verbal?
Me, too, BC. I look forward to reading your posts for the insight you are giving me. Thank you. Keep posting. Smiles to you, Nan

Sat Apr 09, 2011 12:47 pm

Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Non-Verbal?
I am so thankful for you all letting me play in your sandbox…

I feel so lucky to have found you…so many have never had the chance to stop…and think about what is important….like I am doing right now…

you…are making such a difference in my life right now…

you are giving me a lifetime…


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 Apr 09, 2011 3:02 pm

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Non-Verbal?
BC, I would like to thank you right back. It is really helpful to read how things are in your world. I'm sure I'm not the only CG who wonders how a LO sees things, and there is no way to ask. So it's a two way street. Glad the forum is helping you!


Sat Apr 09, 2011 4:05 pm

Joined: Wed Mar 09, 2011 12:22 am
Posts: 75
Post Re: Non-Verbal?
One thing I have noticed in Chris, is his fluctuations are across the board..speech, vision, cognition, mobility..all of it is in flux. He has all new words for things...if he is going to lay down, it is "recline."

If he is going to say something like, "will you help me put my shoes on" it must be said 50 times. If he is not going to speak, then it is just staring.

One day he leans and shuffles...then later on, he walks and does not lean or shuffle.

There are components to schizo symptoms ...OCD.....dementia...Manic/Depressive....all mini versions.

Emotions...every extreme...always changing..from violent to passive.

~~Debra, 52, wife to Chris, 64 DX Vascular Dementia 9/10; Alz 10 or 11/2010; Pseudo Dementia 01/11; LBD in 03/11..Was at home until 4/29, 2011, now in a Alz fac./dementia unit.

Sun Apr 10, 2011 1:48 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Non-Verbal?
I think you have wrote an important message here for the caregivers coming from your prospective. Sadly for the person who has this illness they are slowing down but the caregiver is not and is it possible to relay this same message you have written her to your wife because as I looked at in writing and it has more of an impact on me than just hearing it!

Irene Selak

Tue Apr 12, 2011 9:51 am
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Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: Non-Verbal?
My mostly non-verbal MIL received phone calls from her siblings yesterday. She talked to them as if nothing was wrong with her. She chatted and laughed. As soon as she'd hang up, she'd go right back to being non-verbal. Within the hour she'd even forgotten that she ever talked with anyone. Strange disease we are all dealing with. At least for a moment I got to see my old pal shine through. Now it's back to no words. Sigh. (Sadly, the two calls she waited for all night never came - her own daughters. My heart broke.)

Donna (age 56) caregiver for mother-in-law Margaret (age 88).

Fri Apr 15, 2011 7:42 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Non-Verbal?
Sending you a giant hug this morning Donna. You are so good to be with your MIL. 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 Apr 15, 2011 9:30 am
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