PDA

View Full Version : speech coordination



teresaa40
04-11-2010, 08:52 AM
there's a new symptom title. Speech Coordination.

That's the best title I could give to what I am so frustrated with. I used to speak so well. I could craft a sentence that was a wonder to behold. Complex words and phrases were a specialty. I have always loved being creative with words. Well, I still love it, but, I fear it as well.

I get started with a sentence that should roll fairly easily from my mouth, but, somewhere between my brain and my tongue it gets mixed up, turns to blabbering. I will search for a word, and never find it. I will mix words up, or add words from something completely unrelated, like when Im looking at a cup, I will sometimes say cup instead of the item Im actually talking about, as though my thoughts are blending together. My kids laugh at me, because I have always been such a stickler for proper grammer and speech, and here I am messing up simple sentences. I know I sound funny to them, but, to me, this is just plain scary. I'm so afraid of what it means.

Combine that with the trouble I have swallowing sometimes, and you get progression and I really don't want this thing to progress.

I know I should just go and get tests done, but, we're so broke right now. I can't afford to risk being told it's nothing, I'm fine, but, I also know that if I don't and it turns out to be something, I'll regret waiting. Ahh!!! Why can't health care be something we can all afford? Why do we allow it to be a luxury? I'm afraid of this disease progressing, I'm afraid of being crippled or dying, but, I'm also afraid of sending us into bankruptcy, losing our home, and all because I pushed to have tests done that were inconclusive, again. It's by far not a new experience for me to have expensive tests done that came back clear, but, back then, we had better insurance and we only had to pay a copay of $50 for tests like MRI's and Echocardiograms. Now, we pay most of it.

So I wait, and I watch the symptoms, and really have no idea what the benchmark is for when I will say it's time, and the waiting is over.

rob
04-11-2010, 10:38 AM
Hi Teresaa40,

I know how you feel. I used to be a fairly active public speaker, and I wrote quite a few guest columns and articles for various publications. I used to have somewhat of a photographic memory for things like words, maps, and diagrams. I was also a pretty decent proofreader, and like you, I am a stickler for proper spelling and grammar. These days, I forget how to spell simple words, and I lose myself in mid-conversation with people. I just suddenly draw a blank. It can be really embarrassing, and it frustrates me to no end. I also sometimes get lost on my way home from the store, in a town I've known like the back of my hand since childhood.

I was diagnosed with SLE in 2004, and MS just over a year ago. The cognitive dysfunction caused by either disease can be bad, put them together, and it becomes quite severe. I just deal with it to the best of my abilities on any given day. I have some days where I'm OK, and there isn't much of a problem, so I try to take advantage of those days when they happen, and accomplish as much as possible. My family and friends know that on my bad days, I may come across as odd, or "out there", and to their credit, they are understanding, and just roll with it. Sometimes, when I see them again after a bad spell, we'll laugh about it, and I try to use humor to lighten things up for those around me.

Rob (I think):laugh:

magistramarla
04-11-2010, 12:57 PM
Count me in on this, too.
I taught a foreign language, so I was pretty upset when I started "forgetting" the Latin vocabulary words that I had just taught to my students. Luckily for me, they thought that it was a game that I was playing with them to get them to learn the word by filling it in when I paused. I just let them believe this, and they got really good at finishing my sentences in Latin for me. Jeff is also great at finishing my sentences for me. Most people think it's cute that we understand each other so well, so I roll with it.
I met a lot of people at the Sjogren's conference with the same problem. The docs who presented also addressed "brain fog", so watch my posts as I report on the conference.
Marla

laura.shella
04-11-2010, 01:21 PM
I am having the same problem. It started with severe headaches, and the speech thing was next, no I have trouble concentrating on the smallest things. I have had all the tests and I can tell after almost 2 years the neurologist still cant figure this out. Hang in there. It is nice to know I am not the only one and I am not insane.

tgal
04-11-2010, 01:39 PM
Count me in on this one as well. At one time I was not considered a bumbling idiot but those days have long gone! I sometimes feel as if english is my 2nd language but I don't have a first!

debbie-b
04-11-2010, 04:20 PM
My husband, like Marlas, does quite well, finishing my sentences. With him, I feel comfortable, but with co-workers, I feel very
intimitated and insecure.
I would like to change jobs, because the one I have is way to physical, fast pace, with heavy lifting, but the brain fog is so bad at times, that I don't think I can learn a new job. I can't remember new things, or even talk, can't finish a sentence, that would make any sense to someone other than me.
About the testing, I can't remember if you where dx with a AI, but if you are, brain fog is usually part of an AI disease. My rheumy did not do any special testing for it, he said since I have Lupus, RA, Fibro and Sjogrens, brain fog is part of any of them.
I hope this helps you somewhat, to understand, what you are dealing with.

Debbie

Nonna
04-12-2010, 11:09 AM
my problem is I think one word and another comes out of my mouth. I also have developed the blah blah blah's, where my tongue gets tied. Marla, I studied to be a french teacher and I speak some spanish. I can no longer roll my R's.

This seems to be more common among us than I thought.

Nonna :wacko:

Rob is right: Lupus - you can not win. I refuse to admit defeat.

Linda From Australia
09-27-2010, 05:20 AM
At times I substitute words, and those around me look at me blankly. My family laugh at me because I am always the teacher, expecting my family to speak correctly. They love to correct me any chance they can get. I used to get very upset with the inability to speak properly, but now I realise there is a reason for my speech problems. I am usually in pain, feel sick or tired. So I deal with those issues and usually when I feel a bit better I can go back to my normal speech. I am glad that my problems can be fixed rather simply.

jmail
09-27-2010, 10:32 PM
Doomahickie, thiggamajig, wabberjockie, etc... and as has been mentioned, ole reliable "blah blah blah". I've since added "uhhhh..." to my vocabulary (add a bit of drool in with that, and you can *scare* people)... Now, if I can just get my fingers to do the typing, after the brain engages... whoops, slipped the clutch!

sillylupie
10-09-2010, 06:12 AM
Me too ... words not coming out right.
Feeling very messy.
There are days that my thoughts are as sharp as an eagle.
But there are days, ohh... not so good days that I have no idea what I was on about, imagine those around me!

I've not told the doctor about it.
One time, I told the doc that I was not able to sleep at night, sensitivity to noise - he asked me in return "Are you hearing voices?" - Hmmmmmm

allisono
10-10-2010, 04:57 PM
This happens to me too. It is quite embarrassing. I teach kindergarten, so sometimes they don't really notice but a lot of times they do. When I can't think of a really simple or common word, people look at me like I am stupid. I am going to tell my doctor next time I go, not sure he can help me out though.

Islablue
10-13-2010, 09:16 PM
That happens to me too! Don't feel bad. We just have a lot to deal with as lupies. See.. no words could describe us in my mind, so I just made it up (kind of.. I mean I've seen it before). My hubby gives me "the look" when I'm at the doctor and I start to ramble. He is always like.. okay babe, try not to ramble on.. it is really off-putting to the doctor! haha. He said I remind him of "Old Christine" from "The New Adv. of Old Christine" because she rambles a lot. I don't mean to.. but sometimes my words just don't come to me so I keep talking until they do. But sometimes they don't. Okay I'm rambling.

Stef
12-04-2010, 05:15 PM
This sounds all too familiar.

I have trouble with my reading and writing sometimes too. I can look at a page and just can't take in its content. Sometimes when I write, words get all mixed up with half one word appearing in the next word, or the letters within words getting all mixed up. I have to proof read everything and often find the wrong letters in my typing despite knowing how to spell the words I tried to write.

tgal
12-04-2010, 07:44 PM
Here too Stef. My comprehension is not what it was before. I skip letters or add them to the next word. If I can think of a word at all when I am speaking (which is less and less often) I may pull out something off the wall. Shovel=spoon. Clothes hamper = Car.

magistramarla
12-04-2010, 09:33 PM
Sometimes having a large vocabulary isn't such a great thing. Sometimes, I'll "lose" a simple word, and I'll start throwing out synonyms, sometimes even the Latin or Greek synonym will come to my crazy mind. Jeff will chuckle, and provide the simple English word that I was trying to say. It's so embarrassing for someone with an education like mine!
Anybody remember Quantum Leap? The character on there said that when he made a leap in time, he had a "swiss cheese memory".
That's what we have!
Hugs,
Marla

Stef
12-05-2010, 04:37 AM
Here too Stef. My comprehension is not what it was before. I skip letters or add them to the next word. If I can think of a word at all when I am speaking (which is less and less often) I may pull out something off the wall. Shovel=spoon. Clothes hamper = Car.

My problem isn't as severe as yours but I regularly substitute words starting with the same letter, eg I'm trying to remember a name and maybe pick Carol instead of Claire - causes much difficulty and confusion at work. This morning I tried to tell Mum that my Niger seed feeder had been visited by a bird, I couldn't remember it was a gold finch and called the seed Linnet which is the name of a bird....poor Mum was having trouble figuring out what the heck I was talking about!

I also say words in sentences as I see things; yesterday I said cup in the middle of a sentence because I saw one. I work in a proffesional role in a what is normally a man's job, it's stressful and this kind of thing doesn't help - they already think women are inferior without me going ahead and proving it by saying dumb things!

A couple of months ago I told the Gynae I thought I had Clamydia instead of Candida, this in fromt of my Mum yikes!!!

Nonna
12-05-2010, 05:52 AM
Anybody remember Quantum Leap? The character on there said that when he made a leap in time, he had a "swiss cheese memory".
That's what we have!
Hugs,
Marla

Marla , my SciFi buddy, that's another show we have in common.

Yes we do have Swiss cheese memories

Stef
12-05-2010, 06:00 AM
Sometimes having a large vocabulary isn't such a great thing. Sometimes, I'll "lose" a simple word, and I'll start throwing out synonyms, sometimes even the Latin or Greek synonym will come to my crazy mind. Jeff will chuckle, and provide the simple English word that I was trying to say. It's so embarrassing for someone with an education like mine!
Anybody remember Quantum Leap? The character on there said that when he made a leap in time, he had a "swiss cheese memory".
That's what we have!
Hugs,
Marla

Marla

It sounds like you've done incredibly well.

I have a degree and professional chartership; letters after my name ...... but you might have trouble believing it if you saw me in my current state. I'm a building surveyor. I'm hanging on at work but communication problems have been a constant worry.

magistramarla
12-05-2010, 12:20 PM
I just went through one of those frustrating times:
Two weeks ago, I bought some lovely card-sized paintings from a local artist at the crafts fair. I plan to give them as Christmas presents.
I brought them home, and the cat of course tried to eat the plastic bag that they were in. (he has a strange addiction) I put them "somewhere safe".
Yesterday, I bought frames for the pictures. I started searching the house for the pictures, but couldn't find them. As I went to bed last night, I thought that they must be in the seat of my rollator. I looked as soon as I got up, to no avail. Just a few minutes ago, I was thinking about the NPS wine stoppers that I'm giving the kids, and bought gift bags for yesterday. Then it hit me! I opened the drawer of the wine cabinet, where the stoppers are, and there are the paintings!
Gee, I hate my swiss-cheese memory!
Hugs,
Marla

Stef
12-05-2010, 12:34 PM
I just went through one of those frustrating times:
Two weeks ago, I bought some lovely card-sized paintings from a local artist at the crafts fair. I plan to give them as Christmas presents.
I brought them home, and the cat of course tried to eat the plastic bag that they were in. (he has a strange addiction) I put them "somewhere safe".
Yesterday, I bought frames for the pictures. I started searching the house for the pictures, but couldn't find them. As I went to bed last night, I thought that they must be in the seat of my rollator. I looked as soon as I got up, to no avail. Just a few minutes ago, I was thinking about the NPS wine stoppers that I'm giving the kids, and bought gift bags for yesterday. Then it hit me! I opened the drawer of the wine cabinet, where the stoppers are, and there are the paintings!
Gee, I hate my swiss-cheese memory!
Hugs,
Marla

I went away for a weekend leaving a dictaphone at home with two days work in, ready to take to the office to be typed on my return. My landlord used the weekend to fix my bathroom ceiling. When I came home I couldn't find the dictaphone. There would be no benefit to my landlord in stealing it. This was several months ago and I haven't found it, despite numerous searches. I had to do the work again. It really bothers me.

Hugs, I need lots of those!

red246
12-05-2010, 03:26 PM
I went away for a weekend leaving a dictaphone at home with two days work in, ready to take to the office to be typed on my return. My landlord used the weekend to fix my bathroom ceiling. When I came home I couldn't find the dictaphone. There would be no benefit to my landlord in stealing it. This was several months ago and I haven't found it, despite numerous searches. I had to do the work again. It really bothers me.

Hugs, I need lots of those!

I bought my girls cookbooks the other year for Christmas. I got them during the fall and put them somewhere safe - I didn't find them until we moved in April! Swiss cheese memory is an understatement I think. LOL I'm at the beginning of a bad flare and my words have been getting all mixed up and I can't comprehend anything - no matter how many times I read it. Thank goodness my boys are pretty easy to teach - otherwise we'd be in BIG trouble!

tgal
12-05-2010, 03:49 PM
OMG you have no idea how many times I put things away so I don't lose them and then have no idea where they are! Every day it is a search to see where I put something. I bought sausage one night for dinner and when I went to cook it wasn't there. I was so upset. I just knew that I had left it at the store. I found something else to cook and went to get the spices out of the cabinet and, you guessed it, there was the sausage. Sitting there. Mocking me. Why I put it there I have no idea and I still have no memory of it.

Yesterday I saw the mail on the table and it turns out that I am the one that went out to get it but I have no memory of that. It scares me sometimes how many things I have no memory of. I have had two neuro psych exams in the last 6 months and both showed trouble with short term memory and motor skills. The latest one was worse then the first. At one time I argued with people when they said they told me something but I gave that up months ago. I always assume that I forgot because that is usually the case

red246
12-05-2010, 04:10 PM
At one time I argued with people when they said they told me something but I gave that up months ago. I always assume that I forgot because that is usually the case

My kids always tell me I said something or that we talked about something and I always forget. Used to be that they were just trying to get away w/something - now I'm never sure whether we did and I just forgot or what!

debbie-b
12-05-2010, 04:53 PM
Some people here already know, that I am from Germany, I came to this country 30 years ago, when I was 25.
Today ( bad fog day), I talked to my husband in german, he doesn't speak german, he kept saying " what"?, I would say the same thing several times and he just daid " what"?.
After I finally realized it, I asked him why he didn't tell me that I was speaking to him in german, his answer was, " you sounded so cute".
This has never happened to me, in 30 years.
So if you have brain fog and speak more than one language, it makes for very funny and interesting conversations.LOL

Debbie

tgal
12-05-2010, 05:03 PM
Some people here already know, that I am from Germany, I came to this country 30 years ago, when I was 25.
Today ( bad fog day), I talked to my husband in german, he doesn't speak german, he kept saying " what"?, I would say the same thing several times and he just daid " what"?.
After I finally realized it, I asked him why he didn't tell me that I was speaking to him in german, his answer was, " you sounded so cute".
This has never happened to me, in 30 years.
So if you have brain fog and speak more than one language, it makes for very funny and interesting conversations.LOL

Debbie

LOL! Too funny! Thanks for sharing that. I needed a laugh

Merrilyn OZ
12-05-2010, 05:43 PM
Have just read this thread, I sure need the laugh to Debbie-b.
For ages I've been doing all the same weird things with words, the using the name of something I'm looking at rather than what I wanted to say gets some real strange looks and the family keep insisting they've told me things that I have no memory of. I was begininng to think I must be getting alkzimers, atleast I now know that I can talk to you all and you'll understand - I had to proof read this !!!!!! Its scarry at times, but now I can laugh with you all its great to have such an understanding site Thanks every one

teresaa40
12-07-2010, 03:54 AM
Wow, I just came back and re-read my original post. Things are no better, in fact, they're worse. I've started babbling at work, and that's a really bad thing when you are a 911 dispatcher. I handle the calls just fine, but, Im finding myself avoiding being a call taker because Im afraid there will come a point where I won't. I used to be so capable, so smooth in my handling of high stress calls, now, even the easy calls throw me. I can't think of how to ask a question, and I have no time to gather my thoughts, so, I forge ahead, trying to move quickly through the questions I need to ask, and sounding like a rookie dispatcher. I've been doing this job for 13 years, I was the best trainer in the center (no bragging, just remembering how good I really used to be realistically compared to now) and I worked my way up to supervisor. Im hanging on for dear life, just trying to stay employed at this point.

My memory is getting worse. Day after day I will forget little tasks I need to take care of. Important documents I need to get taken care of for insurance, or for my kids school wants me to come for parent teacher night, or my church will ask me to help out with a project, or anything that is not get up, get dressed, eat, clean, eat, nap, eat, go to bed, gets lost in a mish mosh of details that feel like they're swirling in my head. I write things down and still can't remember to do them. My daughter gave me a Christmas present last year that really should have been helpful to me. It was a tile in a sort of stand. It came with a dry erase marker, and all I have to do is write tasks on it and erase them when they're done. I keep it on my kitchen counter where I see it everyday. Sadly, things like, make dentist appointment for Matthew, will stay on that tile for weeks on end. I see it, I know I need to do it, but, then I forget. Poor Matthew has waited far too long to have his retainer adjusted, and does anyone else take up the charge to get these things done, oh no. I just end up feeling guilty when they don't get done because Mom's are supposed to be on top of this stuff. But Im not like other Mom's.

My granddaughter has been waiting three months for her birthday present, that I haven't even remembered to buy for her, and now Christmas is coming. I sent her brother a present the week after his birthday, but, what I didn't tell my daughter in law is that the present I sent had actually been meant for the previous Christmas and I just kept forgetting to mail it. I had completely forgotten until a week before Christmas when it was too late to get it there by Christmas, and I hadn't even gotten the gift I had planned to get for this same granddaughter, so, I went to Amazon.com and sent gifts from there directly to them, and paid for the gift wrapping. I handled it, in the end no one was the wiser but, still. It's getting ridiculous.

Hmmm, since Im up, and online, I better jog over to Amazon and just get it over with now before I forget again.

SandyR
12-07-2010, 07:55 AM
yes, this is me. sometimes it's also hard to read words and keep them straight. I can't speak, or write, or read the way I once could. I find myself constantly correcting errors in spelling I haven't made since learning to first read and write. In these few sentences alone I have stopped and corrected several times already.