Parkinson's Disease Tulip


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Old 01-09-2010, 05:51 PM #1
lindylanka lindylanka is offline
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Default Happy talking, talking .......... not.....

I am having a problem communicating....... well with spoken communication, and I don't know what to do to make things any better.

I've had a little difficulty with words and getting them out at the right time before, but today I went to London by car with three people I know really well, the conversation was fun, I laughed a lot, but every time I tried to speak it just didn't work, and away things went, out of my grasp, and into something that I was unable to participate in......... I spent the whole return journey unable to talk, except in total platitudes - so when it came time to get out of the car I could do the polite things, and say thanks, how nice of you to take me, and so on, but hardly said a word in two hours, utter brain freeze.......

When I do manage to speak I often think that I am not finding the right words, or to formulate sentences easily - my lips and tongue that won't do the right thing, instead of tripping over my feet, right now it seems to be my tongue.....

Does anyone have experience of this and know what to do, how to get that easy flow back again - or it this something that I am going to have to live with, and get used to. I would love to hear from anyone who has this difficulty, both to share with their experience, but also to see whether there are things out there that actually do help.....
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Old 01-09-2010, 06:05 PM #2
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Lindy,
I have had similar things happen. It's like my mouth is running faster than my brain and the result is gibberish. I have no advice other than I practice what I'm going to say in my head first and count the words on my fingers then when I say it out loud I speak slowly and count on my fingers again. It doesn't make for spontaneous scintillating conversation but at least I can make the occasional comment or response.
Not much help I know.
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Old 01-09-2010, 10:02 PM #3
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Default Communication Breakdown

Lindy,

Do you mean that you know the words you want, but can't articulate them fast enough- they're kind of lost or stuck somewhere in your head sort of feeling? Or is it a fluency in your speech itself? I tend to experience the former.

I feel your pain! I think it is an executive function malfunction we're experiencing... I suspect that conversing does not flow like it used to for us because our brains are working over time compensate and it takes longer for us to find words. I have read that the word being 'on the tip of our tongues' but not making it out is fairly common in PD- we know the word(s) we want but they just don't pop into our heads and out of our mouths like they used to do. We have a loss of fluency to add to the list of what is taken away from us.

I don't know there's much to improve it other than taking gingko to try and slow it down a bit. This is a form of mild cognitive impairment that I guess we're stuck with...I hope someone else has found success with some sort of brain gym exercises - it's really a memory recall issue, so I'm thinking that if we can find some things to help with that?

One thing...you end up speaking in platitudes. I found that if I try to do that it ends up in hilarity as I always mix my metaphors. I try to avoid common sayings or adages but when they do slip out, we all end up with a chuckle.

Laughing to keep from crying,

Laura
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Old 01-09-2010, 11:49 PM #4
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Default communication

Sometimes it feels like I am thinking of and trying to initiate more than one thought at a time, causing a jam up as they all try to come out vocally at the same time. Like when we festinate and are reduced to a shuffle walk.

I had a lunch with teachers last week and never did gain alertness that day. probably due in part to just the stress of getting ready and getting there. Socializing is fun but truly exhausting.

we continue to have good days and bad days; some foggy, some in the clear. but lindy i'm sure you would agree - it's pervasive, invasive, and evasive.

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Old 01-10-2010, 12:39 AM #5
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Frown Add in...

a husband who is decidedly hard of hearing and a neurologist who makes no allowances for "nonmotor" symptoms! I simply move closer to the former and further from the latter!

Seriously, I have had to give up a church function because words wouldn't come. I can still sing, but following the words in the hymnal is difficult. I practice more than I used to and still get mixed up. I photocopy the appointed hymns and other music in as large an image as I can fit on the page, and that helps.

It's so sad. Most people don't mind if I just ask them to bear with me. I did summon the courage to volunteer to lead a group book discussion, starting Wednesday evening--wish me luck...

Jaye
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Old 01-10-2010, 07:06 AM #6
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What I am hearing from you all is that this is something that does impact your life, it certainly does mine!

From all over I am also hearing messages that say we have to keep devising strategies just to be 'normal'. This is a big part of the problem for me, and I suppose a reason for why I like writing. It can be done in my time, and if I get it write the communcation is good. Then my PD friend/collaborator/partner in lifestyle can do the same and the communication grows. But I can't use this device in normal life, You cannot pass notes around, and besides unless I'm at a screen my writing is too awful to read.....

So this impact of communication must be a major one. And implies major personal losses over time......... and it changes not only our perception of ourselves, but other peoples perceptions about us. But intellectually on the inside we are mostly the same people......

I had a change of meds not that long ago that gave me back my smile. People said to me, It's astonishing, I always thought you were really p----d off about something, but now I can see you weren't. Or You seemed really sorry for yourself, and I don't get it about people who do the 'poor me' thing.

I wish there was a med that would do this speech stuff too, because I feel like I am falling back into other people's assumptions.

Tomorrow I shall go get some ginko .........

Thanks
Lindy
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Old 01-10-2010, 07:31 AM #7
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Default You might want to skip the ginko...

...and have some coffee:

http://psychcentral.com/news/2008/11...ntia/3370.html

Jaye
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Old 01-10-2010, 10:38 AM #8
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I have trouble finding words to explain simple things..Sometimes my mind goes hopelessly blank, which is why I will not put myself in a position to do any public speaking, ever again

When I was a PAN Rep, I was invited to a press conference with Congressman Jim Langevin..The anticipation of it made me sick for 5 days..And a reporter asked me a simple question at that conference and I drew a blank

I'll stick to writing..I dont stutter when I write
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Old 01-10-2010, 11:10 AM #9
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Default Try closing your eyes?

Quote:
Originally Posted by lindylanka View Post
What I am hearing from you all is that this is something that does impact your life, it certainly does mine!

From all over I am also hearing messages that say we have to keep devising strategies just to be 'normal'. This is a big part of the problem for me, and I suppose a reason for why I like writing. It can be done in my time, and if I get it write the communcation is good. Then my PD friend/collaborator/partner in lifestyle can do the same and the communication grows. But I can't use this device in normal life, You cannot pass notes around, and besides unless I'm at a screen my writing is too awful to read.....

Thanks
Lindy
Oh, if only I could write!!! That is what makes this disease so hard to cope with, with effective meds, many of us appear 'normal' to others and I begin to feel that way myself, then I go to write out something...I work in a position too where I need to be able to communicate this way. For me, it's not really micrographia; my writing has always been on the small side, but it's as if I can't fully formulate letters when printing...the letters all sort of collide with one another and look like hash marks in the end. My handwriting is no better, that all mashes together too. Anyone find any exercises for this? I found two things:

1) I read that people with PD regain some fluidity in their writing when they close their eyes- this holds true for me but is not practical for the real world. I suspect it's one of those external 'triggers' that work for us. Lindy, have you tried it when talking?

2) I have fluidity and ease - my writing looks normal when I write on the white board while teaching. Maybe we should all carry around mini white boards and dry erase markers? lol.

Laura
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Old 01-10-2010, 12:10 PM #10
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Default Handwriting and speech

I think when you write on the board while teaching, you are using your whole arm and not just your fingers. Therefore, you have more success. My handwriting varies in its clarity. Oddly enough, when my Sinemet kicks in, my handwriting gets worse. My hand jerks unexpectedly causing all kinds of unexpected results.

Back to speaking: I have developed a head bob when I speak to someone, and it makes me look quite earnest. Either earnest or very agreeable!

Ann
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