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.....

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.

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

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.

paula

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

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..... :eek:

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

You might want to skip the ginko...
 

...and have some coffee:

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

Jaye

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

Try closing your eyes?
 

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

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

Writing and talking together! No Laura, I haven't........ and I have both the problems in your communication breakdown post. Something that might help with writing is doing copybook exercises. I read somewhere that overlearning can help with things like this, the process of doing it over mindfully creates a different path........

However, as a painter and artist it seems like something else kicks in and, as Ann says, the movement is from the shoulder, and apart from tiring easily, I can get things to look the way they should. In contrast writing is only legible when tiny, and then it is not visible - another case of impractibility! A fat pen helps with writing and I suspect some of the dyslexia writing aids, lilke rubber grips for pens, triangular large size pens and pencils may help with legibility and size.

As problematic for me is a kind of PD dyslexia, where I am sequencing letters wrongly, it comes and goes, but is particularly bad when writing down messages or phone numbers, multitasking again...... when I am off this affects my typing too, the sequences are wrong and I have to re-do a lot of words, though my keyboard skills are good, off and on, except for speed,

Oh, the joys of PD......

Lindy

I just have to reply to this one!
 

I promised myself that I wouldn't get online his morning, because I have a doctor's appointment and need all of my energy. This in itself tells you that stressors use up our energy. Paula reminded me of this when talking about using all she had to get ready for a social time with teacher friends. Well, I just spent a solid 2 hours getting ready! (this includes a shower and hair-drying). After I finish replying, I will be zapped.

But I want those reading (who won't or cannot take the time to look it up) to understand about executive funcion. This terminology seems to be cropping up quite frequently.

By: National Center for Learning Disabilities (2005)
"Executive Function" is a term used to describe a set of mental processes that helps us connect past experience with present action. We use executive function when we perform such activities as planning, organizing, strategizing and paying attention to and remembering details.

They also show weakness with "working memory" (or "seeing in your mind's eye"), which is an important tool in guiding one's actions."

And, of course, we use executive function when we communicate. Loss of or problems with executive function is one of the first signs of Alzheimers (or dementia). But most of you have only discussed the mental aspect of communication problems. How many of you have difficulty with the "physical" aspect of speaking?

When I talk with people, they can guess pretty accurately how I am feeling (off, on, or inbetween), especially over the telephone, where they cannot see my bobbling head or "dancng" as my grandson calls it. But there are times (getting more frequent) when I slur my words or run them all up together with little or no intonation. That's when both the speaker and the receiver get frustrated!

I was referred to a speech pathologist (also to help with swallowing), but then the inclement weather set in, so I haven't been yet. But dog-gone-it! Public speaking has been my forte, and I'm just not ready to give it up.

I sometimes think that we should keep those speaking engagements to let the public see how we struggle, but there's the risk that you won't be able to get your point across. (sigh)

What to do . . . what to do? BTW there can be absolutely NO head bobbling or dancing until you get up to speak; then it's like someone flips a switch and puts every r eflex in hyper-overdrive!

Peg :confused:

I, too, have had difficulty finding words. It's especially bad if I'm tired. So I no longer feel comfortable doing ad lib speeches though I still will talk from prepared text.

But there's another thing that I've noticed when writing with a pen or pencil. I mis-spell common, easy words. I've mentioned this to my neurologist and he, of course, didn't know what might be the cause. Has anyone else experienced it? It doesn't seem to occur when typing at the computer. Maybe because I'm seeing it as I type? So there are two pathways working?

Violet green,
this is exactly what I call PD dyslexia, this misspelling of words - I call it that because I am really familiar with dyslexia, and it seems to have it's correlates with it, and to link this up with what Peg posted, with kids with learning disabilities, it is called executive function disorder, so why do they want to label it impending dementia with us!!

It comes and goes according to how well medicated I am, as do the speech and tip of the tongue things, so it means it is not permanent, the brain connections are there, do others feel this too?

If so, then there is hope for strategies to overcome this type of problem............ there is a long way to go in helping patients, I know about Lee Silverman and other stuff, but this is not generally offered to patients to improve quality of life, we have to search out someone who knows something, and THEN we have to search out the therapy........ in the past these things have been put down to the aging process, but I beg to differ!! And if THESE issues could be improved, then there must be others..... it isn't all about taking medication and pharma coffers........... and then while I am sure some of it is genuinely PD and would not discount that, I am also sure that some medications do not improve executive function, and some absolutely assist in disordering our long suffering brains!

Lindy

For a while I was developing a stutter so bad I couldn't talk on the phone. It's gone away now, for the most part. My doc told me it was actually a dyskinesia effect of the lips and tongue.

I practice reading aloud, both with and without a cork in my mouth. The cork forces you to enunciate more fully - try it and then see how well you read the same thing immediately afterwards. An old acting trick....

For writing, first of all I got rid of ballpoint pens because they make you grip, and I practice calligraphy, practicing relaxing during the strokes of the letters.

Lack of focus vs. dyslexia
 

If you know the word is misspelled, then it is not dyslexia. It seems more like a lack of focus. I find that when I read, I race over the paragraph. I have to make myself slow down. It is not as though I am speed reading because I miss content. When I write and make errors, it is usually lack of concentration on the task at hand. I do believe PD gives us attention deficit disorder.

I read a lot about dementia and PD, and I worry, but I see others who seem to have no diminishing of their cognitive skills. It may take longer to pull up what we know or communicate what we know, but the knowledge is there. Because of this, I don't think we would be a success on Jeopardy. We are not fast enough. However, on Millionaire they give you the choice of answers and a reasonable amount of time. We would do better there.

I have had many tests of my cognition, and so far so good. Despite the good test results, I tense up and worry about any wrong answer. Calling a rhinocerous a hippopotamus may not seem so important, but I chastise myself for the error. I am in two research studies, and I am thinking of eliminating such tests from my life. Also, how does taking them help me or anyone else? The research community seems obsessed with defining us more and more precisely but do little to cure us. They want to know who gets it, how our gait can be charted, how to know someone is at risk, how long it will take for us to go downhill, blah, blah, blah. Fox said words to the effect that he wondered if research was ever going to help him to be able once again to tie his tie? My point exactly.

Ann

relating to speach problems
 

I used to be an bright , funny and articulate speaker. Now I can hardly communicate my needs let alone a conversation with some one other than my
care giver!
Year 12 now. I am taking Stelavo 125s up to 6 a 24 hour period and getting about 4 hours a dose! also just began taking lexapro and amantadine (anybody hear of this) after a drug holiday 3 weeks off lexapro and zonisamide and having a bad time without! Can anyone relate?

Fiona,

Thank you so much for this suggestion! Calligraphy focuses on flow, and fluidity is just what we lose in our handwriting.

Laura