We must be somewhat synced up this week (see Twist of the Tongue).
From NIDCD - "People with either form of apraxia of speech [acquired or developmental] may have a number of different speech characteristics, or symptoms. One of the most notable symptoms is difficulty putting sounds and syllables together in the correct order to form words. Longer or more complex words are usually harder to say than shorter or simpler words. People with apraxia of speech also tend to make inconsistent mistakes when speaking. For example, they may say a difficult word correctly but then have trouble repeating it, or they may be able to say a particular sound one day and have trouble with the same sound the next day. People with apraxia of speech often appear to be groping for the right sound or word, and may try saying a word several times before they say it correctly. Another common characteristic of apraxia of speech is the incorrect use of "prosody" -- that is, the varying rhythms, stresses, and inflections of speech that are used to help express meaning."
This is a symptom of mine which was present before diagnosis (see Watch It, Smartie Pants) and has certainly increased in the past two years. So much so that those around me realize how much I sometimes struggle with words.
Word Salads, indeed.
Okay, Smartie Pants, those Dowboys are pretty Callous. 
I never heard of apraxia before, but it sounds all-too-familiar. Is it generally associated with MS, or do people also have it independently of MS? I'm going to have to learn a little about apraxia.
After reading your previous posts on the topic (thanks for the links), I remember having some of these word problems years before major symptoms of MS were present.
Can you just picture us trying to carry on a verbal conversation?
Hey Mandy & Lisa,
Thanks. Now I have another name to add to my list of things that don't work. While I was still teaching English (EFL - to Israeli high schoolers) 9 years ago I found myself not being able to remember a lot of words and then not being able to say a lot of words that I knew, but couldn't get clearly out of my mouth. I guess that's when I realized I wouldn't be able to continue much longer. I retired on disability at the age of 51 in 2002.
OK. That was actually good for me. Then I started feeling terribly flustered any time I had to talk to strangers, i.e. not family, and when talking on the phone. I much prefer emailing and im so I can fix mistakes before I send out my messages. I really don't feel good talking on the phone, especially when it's something important or official.
I guess I'll tell my neuro about apraxia next month when I see him. He still thinks I'm in great shape 
.
Thanks for this explanation of me.
Feel good, be happy.
Peace & Serenity,
Maris in Israel
Hey Mandy,
I am so there. During Christmas, when I had about 100 things to do, I really thought I was losing it. I drove my younger daughter to preschool and had a list of things (in my mind) I needed to buy at the grocery store and Michaels. I drove over to Michaels and realized I didn't have my purse. I drove home and decided to just go to the grocery store. Given my forgetfulness, I decided it would be best to make a list this time. Then I drove to a different grocery store only to realize, I had forgotten my purse again. At that point, I only had 30 minutes before my older daughter got home with a playmate and I didn't have their lunch. So I quickly got in the car, WITH my purse this time and got the bare essentials for their lunch and made it back home with 6 minutes to spare.
I just read Julie's comment and I think I need to have one of those tests and soon. I remember thinking my memory has been getting worse and even said it to Scott but he reminded me that I am getting older. I had read an article in the Washington Post saying that very same thing - that the mind does start to lose some of the short-term memory as we age so I dismissed it as well. But I have really been thinking that it may be the MS. Now long-term is still there and so most people are amazed by my memory ability. But pretty soon, I am going to mess something up - a lot and I am scared of that.
Thanks for the post.
Kristin
Kristin,
My long-term memory is crystal clear as well, not at all a problem. But that forgetting thing is very disturbing sometimes. As you said, we really could mess something up. That and not knowing if it is just part of our overly-busy lives, getting older, or an MS-related problem. And what can be done about it?
I'm adding this to the list of things I must discuss on my next doctor's visit. Thanks for helping us all to realize that we're not the only ones!
The original post and all the comments hit me with a whallup. Thank you all. I had a long career in which I gave many speeches to groups of all sizes, ran meetings at which CEOs and community leaders attended, and even had a public affairs Cable TV show for a few years. Speaking and using words was never a problem for me, in fact many times I was called on to speak without having any prepared remarks and never worried about it. I started noticing that I had to think about my words a little before I went out on disability ten years ago. Since then I have continued to do some public speaking about issues related to health policy and other topics, but now have to write out what I am going to say and review it a few times before I begin to speak. And I have started to keep my written remarks in front of me in case I go blank all together.
The more immediate problem for me is my day to day speech; I too have trouble finding words and am appalled that I have begun to use fillers while I try to find them. "Wait a minute, I can't think of the word." or "Um, hold on I know what I want to say here." These break up my speech, but more importantly my thoughts. Have you ever been lost for a word and by the time you find it forgotten what you were going to say? I wish I could jot down a note so I remember what I was saying in the first place but I can't carry a pad and pen around my neck, or can I? I can start a new fashion trend because if I don't put it there I may not be able to find it when I need it. I know I am aware of the changes in my speech more than others, after all they are my words, my thought process, and it drives me crazy that it is changing so much.
It isn't just my word recall, my whole speech pattern has changed. It is more broken up and hesitant because even when I know the words I tend to speak more slowly while I am seeking making sure I have the right words for the conversation. For instance for a while every time I wanted to say medicine I said make-up, and wasn't even aware of it until someone pointed it out. Again, I notice things more than others, but I am afraid it is only time until it becomes evident to all.
Is it MS or Aging? While aging may have some impact on our memory, and since I am through with menopause I assume it does, I know many women my age and older who are able to find the words they need to complete a thought. And I am not speaking of difficult or uncommon words, I am speaking of words like clock, jacket, and other very common words we use every day. Have you found yourself describing what something does because you don't want to waste any more time trying to remember the word. "You know the thing that tells you what time it is." That's always a good way to impress someone in a conversation.
Because of the nature and the extent to which I can't find my words and my speech is changing I believe it is more MS than aging. And there are other memory and organizational losses that I am experiencing as well, which also are related to MS. My neurologist referred to my loss of executive function, which includes such things as organization, problem solving, reading comprehension, and others, due to a lesion in that area of my brain.
As with many of the symptoms we experience, there will always be someone who does not have MS but knows exactly how it feels when we mention a symptom. Of course everyone has a time when they are not able to find a word, and many will assume we are experiencing the same thing. "I always get that, when a word is right on the tip of my tongue and it takes a while to get it." I don't go into it, after all I am not in competition to have a worse memory or word retention than someone else, but sometimes I want to say, "Tip of the tongue? No, my words go under the tongue, down my throat, through my esophagus and into my bloodstream, then down and out the little toenail on my right foot. That's how far removed it is from my thought process right now." But I don't say it, after all it won't help me retrieve the word and will probably make me look a little silly.
Thanks for bringing this topic to the group. Sorry for my long comment, but the words just kept on... LOL I also don't have quite the same problem with my writing, although there are times I am sure some people wish I would.
Yes, Yes, Yes!!!!
You've said it well. I brought this up with my neurologist once, complaining of trouble finding words and keeping things organized in my head. He sent me for an abridged version of a neuropsych exam which lasted only 90 minutes.
I passed the exam, except the part where the report said I was depressed. Hell, I knew that before I even started. But in my mind it didn't explain the need to 'explain' things in the middle of a conversation like "the part that swings when you go between rooms (this while moving your hand in the motion of a door)." Then someone will supply the word door so that you can say "thank you, yes, door" and continue what you were trying to say (if you hadn't forgotten by then).
It's fun, isn't it? LOL.
Oh my gosh I do that. I am only 31 and my delayed "speech" has really started to worry me. One day it was something as simple as a watering can. "You know, that thing that you water plants with...what is it called...you know?" Of course my husband is staring at me like I have lost my mind. So embarrassed and worried it is going to happen in a staff meeting or in front of a parent. My first graders don't really judge, so that is not a problem. :)
I have been so worried about the cognitive functions...and felt so alone until reading these posts...I wish I could blame it on aging without everyone laughing at me. I'm 26 and with all of the other embarassing symptoms I've had (loss of stability resulting in many tumbles down the stairs and over nothing at all, loss of bowel control, etc...) This one has become the one that upsets me the most. The people I want to talk to about it...don't necessarily understand what's going on...or think that I am just becoming stupid...
Thank you...your post helped me to feel as if I wasn't completely alone right when I didn't think I'd find any person to talk to.
Sometimes, when reading comments like these, I just want to cry.
They are not necessarily sad tears, but tears of relief and a sense of bonding. Without forums such as these we would all continue to feel so alone, so isolated within our own fears.
Instead, we find we are not alone. Far from it. While this doesn't change our physical symptoms, it helps beyond measure emotionally.
Thank you all for participating here. We are most assuredly NOT alone. There is strength in numbers.
Hi guys its me always late, but it;s me. Hi Maris I hope that all is well with you. I pray everyday for you and your family. We are going to be just fine yall. Our white horse is coming, he is just old and tired
but hr's coming. Just keep doing what you are doing, stay active, rufuse to give in that is what I do. I fall but honey I just get up, if I break something, they have the most colorful cast now ladies, and you can buy the most beautiful decorations to go on them. People are generally very nice to hanipcapp people, use it to you advantage, I do. Read a lot it keeps the mind sharpe, we forget because we are getting old, yes we have MS, but we are getting old also face it I had to! Stay busy it is the best medicine believe it puts your focus on something else other than yourself and it works. You will not have time to be depressed. You are allowed one depresseion moment every 3 months and that is it. That is enough. Life is short, and we got a lot of living to do! If you hurt, and we do, pay it no mind, and you will be surprised, how it goes away, it is called mind over matter. Now this does not fix everything, but it will put a dent in it. Yes we have it bad, but look around, bad is all around us, yes we will die with MS but we will not die from it. I plan to go down fighting. I am working on my Mother's day event. I did it last year, I was not going to do it this year, but they will not leave me alone, so I got to do it, I did not get any pictures of the church dinner, but boy was it pretty. I am so sorry, please forgive me. I have been told by the ladies at church, you do the planning for the the Mother's day event, and we will be your hands and legs, so I do not have an excuse. So my fellow MS friends, get busy, find something to do, read, do crafts, no on taught me to do crafts, it just happened. I love you all. Take care, and we all are going to make it, this I know!
Sherry
It's me again. I have just read the additional comments and wish I could visit each one of you and share a cup of tea as we discuss this important issue further. So let's just pretend we are doing that and sharing a personal moment.
A few things came up in the comments that I would like to comment on . First, whether it is our cognitive loss, our falls, or any of the other symptoms we manifest, I think it is fair to say that the best we can expect from those who do not experience the symptoms themselves will be a general sense of sympathy, but if you expect real understanding you will continue to be frustrated. It took a while for me to realize that when I discussed my fatigue others could only relate to it in terms of their experience, and few, if any, have had the misfortune to experience the overwhelming and sudden onset fatigue that I do. It's the same with all the symptoms we experience, others might have had something similar but more than likely it isn't the same, or as long lasting, so they can't really empathize. Those who spend the most time around us may learn to accept it, and even understand it a little better, but even they will not 'get it' like we want them to.
My cognitive losses and my impaired vision are the two most difficult symptoms for me to accept; I once read several books a week and now am lucky if I can read one every few weeks. I see double and my vision is blurry, sometimes so bad that the page turns into a grey blob. At one time I could read something quickly and understand it completely, and now if it is complex I often have to read it several times before I grasp all the complexities. And if there are instructions to follow I am at a real loss, which is a real problem for someone who lives alone.
While it took some getting used to, I now use a wheelchair or scooter to get around when my crutches aren't enough and I consider myself fortunate that I can get around independently and live in a city where there is accessible transportation. I do worry about what I will do if my sight gets really bad, or I lose it, or I become too dependent on others for any reason, but for today I do the best I can, ask for help when I need it regardless of how much I don't like to, and try not to worry too much about the what if's. I'll deal with those when I have to, although I did make sure all my insurance and paperwork such as health proxy, will, and other documents are all in order now in case things do deteriorate.
Best wishes, I hope that today will be a good one for all of you.
Denise, I am so there with you. If I think too much about it depression probably set in, so I choose to do other things and not think about it. I guess you can call it not facing the music. Hey it works for me. I am one of the more blessed ones, I can still read more then one book at a time, and still do my crafts, just not in the same room. It will get better for us, God loves us, he really does. We just have to be patient. I am. Sherry
Dear All,
I read all of your posts with empathy! I want to share a hopeful suggestion: Ritalin. Without it, I can bearly complete a sentence. With it, speaking is much less stressful. Before diagnosis (and pre-Ritalin), my cognitive function was my worst MS symptom. I do believe my "memory" is not deteriorating in the normal way related to age (I'm 44). My long-term memory is notable. My memory in storage, or immediate memory, is frustratingly impaired. My kids finish sentences for me constantly (thank goodness). I write for a living, and thankfully when writing the words do come more easily. In speaking, I find myself substituting words, searching endlessly for words...it's so frustrating that before Ritalin, I actually stopped speaking to people as much. I always feared how I would come across. I think a huge problem is how little understood this problem is, and how very much it can affect us. It's also easier for our neurologists to see that "physical" issues are a problem, but we need to impress upon them how important and debilitating the cognitive problems can be. I'd rather not be able to walk than not be able to think or communicate, and the public would have more understanding of that visible problem. I think the reason the cog function is so disturbing is because our thoughts and our communications say so much more about who we are than our physical appearance does. When executive function is impaired, our whole personality and way of being in the world is affected for us and also for those around us. The only way I can cope with it is to try to have a sense of humor, to joke about needing Ritalin in order to speak, and to explain the issue to others in a way that makes them feel comfortable enough to laugh as well when I say something "stupid" or say....nothing at all because I can't find the words! Anxiety about what others will think of me always just makes the cog fog worse, so acceptance must be, for me, the order of the day!
Look forward to your comments, and send you all a wish for good health.
I was prescribed Ritalin to help with fatigue, not cognitive issues. Unfortunately, it just gave me a huge buzzing headache and gave me a sense of anxiety and so didn't work for me. But I have been offered Aricept which is supposed to help with memory issues (I declined because at the time I didn't want to add more medications).
Interestingly, I was also prescribed a drug whose name I can't recall right now, but it is used to help people who have anxiety attacks I believe. Because I have difficulty finding words and responding quickly to questions in pressure situations, I was having a lot of anxiety when needing to do public presentations for work. My increased anxiety was just making it worse. Now I take 1-2 of these tablets before a presentation to remove my anxiety. It doesn't improve my groping for words at times, but it does keep my heart from racing and turning an uncomfortable situation into a disaster.
I tried Aricept, but it tore up my stomach and made me very edgy. I found the Ritalin decreased anxiety, as I was less stuck searching for words and trying to remember what I'd forgotten all the time! I guess it's true, we're all different and respond differently to different meds. What is also true: we need to support and encourage one another! Glad you've found something that helps.
Hunting for the right comment to say is a basket of bolts that a person gets tried of dealing with at times. Me as a mechanic forgeting what size wrench you want or the right size bolt makes me freeze in mid thought, and the comment of why did I walk in here or what was i going to do frustrates a person. I am getting to the point that I will do the best I can and work on remembering. Started Copaxone doctor told me we have to try and slow this down and not to stop using your mind keep it active do not let it quit are my words.
So glad you took the time and trouble to comment. You most assuredly are NOT nuts, and neither are the rest of us. We are just dealing with the trials and tribulations of life with MS to the best of our ability. It's not a mental or intelligence based problem.
I've been on Copaxone for five years. It's hard to gauge the effectiveness, but I'm holding my own.
I agree wholeheartedly that we need to exercise our memories and keep working on our words and, most importantly, never give up.
Thanks for sharing your point of view here.
"Talking funny" has been an issue for me since my most recent flare. I was very articulate before MS got worse. Some of my family has assumed that I am abusing drugs. This is terribly frustrating and hurts me emotionally. To automatically put a label on something they don't understand, even when I explain what's happening, shows an apalling lack of support. I know they lack education, but refuse to even read the literature. I try to ignore them and just go on, but deep down, part of me feels damaged, like I'm not as good as other people. I know "what people think" doesn't matter, but it still feels bad, especially when I'm still trying to get used to this cognative malfunction. . Anyone else experience this nonsense? Did you reach these people with the facts about MS, or just "blow them off?" Thanks and God bless us, Katkan
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I think I'm more afraid of the cognitive deficits that occur more than the physical issues with MS. The changes in the way I think make me feel like I'm losing myself.
For me, it was obvious this wasn't normal aging. One day I forgot what to do at a 4-way stop intersection and sat there trying to figure it out, palms sweating. I say the wrong word frequently, and absolutely cannot multitask two things at once. My thinking has slowed and sometimes adding 2 plus 5 gets me counting on my fingers. I'm a college grad.
I've had a couple of neuropsychology tests to determine if, and how much, MS is impacting my brain function. Five years ago, my first test showed minor problems. My most recent test a year ago showed major deficits. I knew I was having more problems but was shocked at the results. It was like a punch in the stomach. The dr said I'm no longer able to function in a normal work environment. He recommended disability.
I know that's in my future but I'm just not ready to move to that future yet. I reduced my work hours, which has helped, but I do feel a bit as though I'm on a train and the tracks are going to end somewhere ahead.
You just reminded me of the time I drove home in the rain but, upon pulling in to my driveway, couldn't figure out how to turn the windshield wipers off. Suddenly, all the little gadgets in the car seemed unfamiliar. That was definitely NOT a good feeling.
Aging or MS, it is frightening and discombulating. Guess it's something we should continue to discuss with our physicians.
Thank you so much for your input.
Wishing you well.
Hi Juile have been going through this in the recent past I was an extreme mulit tasker and I lived for each day I was a road guy where I worked 33years 3yrs ago came of the road they noticed I could not go as fast. Kept trying I have had MS for 32 years had MRI recently The doctor was amazed that I have been able to do all that I have done. Right now I have to do the best that I can and not beat mysely up. I know how you are feeling. Stay positive Try not to let it win. You just forgot for the moment. I am to the point of counting to three before I do or say certian things.
Hi David:
Thank you for your encouragement. It means so much coming from someone who understands what this is like. You're right, too, in just counting to three. My neuropsychologist told me the main thing I need to remember is to be patient and forgiving with myself.
I appreciate your taking the time to write this.
- Julie