Memory Loss/Word Finding Difficulty?
AnonymousSeptember 7, 2006 at 8:37 am
As I’ve indicated before, I was diagnosed with GBS on May 25, 2006 with paralysis from chest down for about 4 weeks (no ventillator dependency). I also noticed that I was having problems with some memory loss that was diagnosed as expressive aphasia/word finding difficulty. I teach nursing at the Graduate level and I’m finding that much of the problem is at that complex level although sometimes I’ve had problems in just everyday conversation.
My Speech Therapist wanted me to post a message to find out if anyone else is experiencing this type of problem or anything related to this. I think it is important particularly since some of what patients with GBS experience is different than how physicians see this disease.
I’m also experiencing excrutiating pain and we all know what the MDs say about that!!
I look forward to hearing about this.
AnonymousSeptember 7, 2006 at 2:06 pm
Many, many of us experience the ephasia you are describing. It is a very frustrating experience, especially when you work depends to a large degree on your ability to communicate. I am an architect and my work very often involves educating clients and paint verbal pictures – both are difficult to do when you often have to pause to find a word. Unfortunately, I don’t know of a quick cure for the problem.
I’ve learned instead, to camoflage it. I used to have a fairly quick speech pattern. I have slowed it down considerably. This makes any pauses to search for words less obvious. Also, I am careful about my facial expressions – instead of looking embarrased or distressed when I can’t find the word, I try to assume a thoughtful expression. Another good trick is to divert attention away from what you are saying by by rising from your seat to get something to drink, or having something in front of you to show visually what you might be struggling to say verbally – this can buy you a little time to get your words together. It’s all in the presentation.
I am 2.75 yrs post GBS and still expericence this problem, although much less frequently than I did at first. It continues to improve, and I’m sure yours will too. Be patient. Easy to say, hard to do!
There are solutions to your pain. You don’t have to just live with it. I don’t know what you’ve tried so far, but if you can tell us what you’ve tried, maybe we can help send you in the right direction.
Best wishes for more recovery soon.
AnonymousSeptember 7, 2006 at 2:17 pm
I also had this problem, although it has been improving slowly over time. I am 9 months post-GBS and initially I had a terrible time even carrying on an everyday conversation. I knew the words I wanted but I just couldn’t get them out of my brain and through my mouth. Now it usually only occurs related to more complex ideas and discussion. This has been extrememly frustrating since communication is an everyday part of my work as an engineer.
Although I still have this problem, I also “camoflauge” it by pausing and looking thoughtful, by thinking out what I want to say before I verbalize it, or by speaking slowly, which usually works well enough that no one notices. But…I still feel stupid when I can’t find a word in the middle of the sentence and it makes me very frustrated.
AnonymousSeptember 7, 2006 at 3:02 pm
I use to lose my train of thought only once a month or so. Post Gbs it’s several times a day and even more so when fatigued.
Some days are better than others and I’m two years out and MUCH better than a year ago.
When it happens now I just stop, sigh and say “damned GBS” or “damned percocets” and people smile and wait.
It’s not how often the train derails as much as how quickly you get it back on the track.
AnonymousSeptember 7, 2006 at 3:25 pm
I’m a CIDPer (twelve years) and yes, I have problems. There are times, particularly if I’m tired, when it seems that people around me are speaking a language in which I’m not entirely fluent. I have to listen closely and think about what they’re saying before I can understand them–I get the words, they just don’t always make sense together.
And trying to articulate my thoughts isn’t always easy. I’ll stop and have to hunt for easy words. Happily for me, my friends have gotten used to it and just wait patiently until I find the word or some synonym that fits.
AnonymousSeptember 7, 2006 at 7:51 pm
Me too! I experienced this after GBS. It improved, gradually. Once I stopped being scared of it, things got better. Simply being wary of it makes you more aware and it can happen more often!
Yet, occasionally, it still happens! It could just be me, I don’t know. Whether it is GBS caused or because of my nervousness when trying to communicate something, blowed if I know! But it happened today, twice. I knew in my head exactly what I was trying to get across but I was talking to our Regional Manager about work stuff and because I could not get the jargon (so to speak) tripping off my tongue, I ended up just standing there, looking at her! I don’t really have a way of coping other than – I take a deep breath, close my eyes, and then try to explain and after a few mumbles I get going again – rather like a train starting out.
It used to rather embarass me but now I just imagine that the person I’m speaking to thinks I am in deep thought attempting to explain some highly complex idea!
I think it is GBS exacerbated by lack of confidence etc – because of the GBS. Hope that makes sense.
In other words – don’t sweat it! It will come back. After all, it is a very human trait.
Oh, and it doesn’t happen often these days – in my case, it sems to be tied in with lack of confidence, new job etc. But, definitely, it started after the GBS. Funny thing is though, I can be on the phone at work and the words just come most of the time. It’s that little ‘hiccup’ that is a nuisance although today when I rather stumbled verbally, I was thanked for being honest and not giving glib answers!
AnonymousSeptember 7, 2006 at 9:28 pm
I have had the same trouble. I am about 16 months post GBS. I am much, much better than I was when I got out of the hospital a year ago. I have found, that with time, it does get better. I went back to work, it improved greatly. I believe it was the requirement of actually using my brain. I still have problems with it when I am fatigued, but it is steadly improving.
AnonymousSeptember 8, 2006 at 1:50 am
As you can see you are far from alone. I also had severe memory issues for at least a year after coming down with CIDP in Nov 2003. My memory issues have been blamed by various Dr’s on Post-Traumatic Stress and my medications. The good news is now at almost 3 years my memory is back to normal. It caused me a great deal of stress, I couldn’t remember from one minute to the next. They put me on Ritalin which I think at least helped me with focus etc., I did alot of memory excercises also to try and help the process along. Take a look at your medications and see if it is listed as a possible side effect, if your on Neurontin I know that causes a definite brain fog. Good luck and keep asking questions.
AnonymousSeptember 8, 2006 at 4:54 pm
My memory loss was so bad several years ago that I thought I had early onset Alzheimer’s. When I finally settled down with the aid of my therapist, it became clear (though–sorry for the bad pun–not memorable) that it was due to heavy-duty asthma meds, depression and panic attacks. Group therapy with other people diagnosed with post-traumatic stress disorders really helped.
One of the best tools we have is sharing information with others. If it weren’t for the website, we would be struggling alone.
AnonymousSeptember 14, 2006 at 6:30 am
hello all. u will have to forgive me if i screw up here. i just found this place (thankfully) and this is the first time and first post in a place which actually SAYS it’s for CIDP. i think i am still in shock as i’ve been dealing with this now for close to or three years now..still can’t believe that. you can maybe imagine how much i want to ask and know and just to hear from other people who have been and are going through this as i have had to deal with it alone and if i wasn’t such a stubborn person and fighter by nature i don’t know. and there are now more and more days that i can’t fight and wonder if this is ever going to stop.
pls forgive me for going on here. what caught my eye was the post on word finding and speaking difficulties because i have had that for so long now. in fact, in the beginning even i was aware of it. i saw it mentioned in the first neuro’s report i got and did have a few people also mention it to me. i thought it was gone and seems it only got worse. this sounds awful i know but for me rite now, just reading these posts, actually seeing with my own eyes that it’s NOT just me…i’m NOT crazy despite some not so nice things some people have assumed due to these problems.
i don’t want to take up a lot of time and go on and on here w/my story so can anyone perhaps let me know how this works. what i can maybe finally let out that i’ve had to hold in, questions i have, wanting to listen to and know what others are dealing with. if i sound a little “needy” and “desperate” rite now (two words which have never ever applied to me in my life!)…well, guess its’ b/c i am. and scared. i have always been a strong, articulate, intelligent and very, very active person..my entire life. now, most days i can’t even hold a cup without dropping it or walk without almost falling or falling (latest ended with a consussion and additional problems). how do you stand by, fighting so hard and still have to deal with what starts to be a losing battle as more and more independence and trying to do normal daily functioning keeps getting less and less no matter?? not even talking about the non stop pain.
again, didn’t mean to go on. sorry. at least i just now know that maybe there are others of you out there and while my heart breaks for you, i don’t feel alone in this. if i haven’t turned anyone off or ticked anyone off in my post here. don’t mean to. im just not quite sure what to do here. so, thanks to anyone who may read this and might be so inclined to share anything….anything at all. thank you, dj
AnonymousSeptember 14, 2006 at 11:46 am
Hi, DJ, and welcome.
No apologies necessary. We’ve all been in your position. Discovering that you have a chronic medical condition, no matter what it is, can be devastating. Learning to deal with it, particularly when it’s a rare disorder like CIDP, is difficult at best. But you’re not alone. Here and on the UK Web site ([url]www.gbs.org.uk[/url]) you’ll find a plethora of information, and a lot of good friends who’ll help you through.
So post away (and note that there’s also a special forum for CIDP). Although the disorder is different for each of us, you’ll no doubt find someone who’s experienced what you have.
Best wishes in the battle,
AnonymousSeptember 14, 2006 at 1:02 pm
deb, thank u so much for your post. didn’t realize i was in a different place than to do w/cidp or related (?). don’t yet know the differences and you know how the diagnoses can start to add up (think there’s a disorder, syndrome or whatever for everything). thanks again….finally something. feel better already. please take care, dj
AnonymousSeptember 14, 2006 at 3:22 pm
Deb gave you the address for the UK GBS/CIDP site, many of us also go there. There is no right or wrong way to do this. The forums are divided up according to what is posted about. Each sections covers a specific area such as CIDP, GBS where you can ask questions or respond to questions relating to CIDP and GBS. The other sections cover other areas, Main Forum is for anything that doesn’t fall under another section but is related to GBS/CIDP. The other sections are for specific discussions on the other areas relating to GBS/CIDP and its variants. The Lighter Side is where we post jokes and non-GBS related things. I hope that helps a little.
AnonymousSeptember 14, 2006 at 7:53 pm
There is so much overlap between GBS and CIPD that most of us post on more than one area, even though we ourselves may have one or the other disorder. Often, we can be helpful or be helped by someone with either.
Welcome and hope we can help by sharing with you.
You must be logged in to reply to this topic.