"I don't know"

[macarolina]

These three words have become an ever increasing part of my daily language. What were you going to tell me? I don't know. What did I flip over to this computer window to find? I don't know. Why are you doing a work task differently than you just told me you would do it 15 minutes ago? I forgot I said I would do it that way. I guess "I forgot" is starting to rival "I don't know."

I've been used to a chunk of I don't knows over the past 4 years, but it is increasing. The I forgots are more of a newer thing. I think I've finally figured out how to describe many of my I forgots-- I just don't have mental layers in my brain anymore, or a lot less. Well, really I don't have access to the mental layers with the same facility that I used to use all the time. If I don't have a prompt to get me to the suddenly walled off layer of thought I had been on before, it might be days before I circle back to it, if ever. Prompts are my friends, but boy to I have to use up a lot of time looking for them- and the prior thought they help me reach.

I have a really brain-intensive job, and all of this is really thrown in my face on the hour. Usually I can just say oh well, that is how it is now, but the past couple of weeks have been harder to reach that acceptance. Hard to accept it when the expectations of others (work in particular) are for me to be at my old self.

Anyone else have their own way to explain the I don't knows? Anyone have ways that they've successfully had work colleagues (boss in partic) get to a better understanding of where you personally are at (the whole idea of cognative issues in MS has already been discussed)? The worst is with clients- can't really tell them their advisor is experiencing brain issues and keep their confidence. So they just go on thinking I'm an idiot for no reason--- so infuriating!

[22cyclist]

macarolina: these little, or big, cognitive issues can make us feel crazy from time to time. One way to help yourself is to get a neurocognitive evaluation by a neuropsychologist. These tests will show you where you are deficient and will give the neurophyschologist an idea of how to best help you. At the end of the exam, you get a summary of your impairments and what if anything can be done about them. Your neurophychologist can set up sessions to help you with your deficiencies, or if they are mild, simply suggest things that will help you at home.

In the end, the report will give your physician an idea of where you are neurocognitive wise, you can then have them write something for your supervisor at work to explain your problems. As for your clients, if your impairments are severe, you may need to take some time off to recover some of your lost abilities if possible. If not possible, you may need to look for a less demanding job. An objective clinical report will give you the evidence you need to make these decisions.

It may not be as bad as you think.

Good luck.
Lisa
Moderation Team

[Leeaura]

Brain where r you? Must find u. I am your leader!

Macarolina,

Does your Neuro test your Vitamen B-12, Vitamin D, and Throid hormone levels? Do you take Ambien?

My cognitive skills have dropped so far in the last few months that I can't carry on a 3-word convo w my beagle, much less anyone else. My 82-yr old mother w dementia has been finishing my sentences. Hey, who is taking care of whom around here?

Anyway, my Neuro said that unless I was off Ambien, and tested at appropriate levels for the others, the results of the neuropsychological testing would b useless. We r taking one step at a time. I have bloodwork scheduled on Monday. Based on those results , doc will decide what is next.

I don't know how old you r, or how long you've been Dx/experienced cognitive issues but I hope things turn out ok, AND quickly!

[justacowgirl]

I had a neuro psych exam this spring. It was helpful as an indicator in the future to see what level I work at; but I was already doing everything they suggested to assist myself with memory etc.

I feel for you. I had a job that was very intellectually demanding and I left it to employ myself in a less demanding field.

I still use my smart phone to remind myself of pretty much everything.

[macarolina]

Thanks all for the thoughts and suggestions. I have had two neuropsych exams. One was about a year after I was diagnosed, to get a baseline and figure out some problems that had started up prior to diagnosis. At that point there was some mild cognative impairment. I got another exam earlier this year. Even though it was a repeat of what I had done before, and I excel (used to?!) at bettering tests the second time around, I showed moderate cognative impairment this time. I honestly think it would have been even worse if they had figured out how to re-test me w/out doing the identical tests.

I'm sort of at a cross-roads with my job I think-- as I have excellent disability insurance through this job (if approved, of course), so I can't switch jobs. And sometimes I do ok for chunks of time, though it is much more of a struggle than it was before. But now there are errors popping up here and there, more frequently. So far, fixable (though a few have been at big time expense to the client). But I feel like I'm a ticking time bomb... I also have no personal life, as all my energy is expended to get to and do the work. I'm so spent right now I don't even have the energy to plan a vacation-- which is unheard of for me.

ps- Leeaura, I have a Beagle too Luckily, I can still remember her vocab words-- treat, walk, ride, food...

[dyin_myelin]

feeling your pain

On the phone today I said, "I trade primarily in Columbia Acorn Funds and". . .......I just couldn't get it. Vanguard. Have done so for a decade. The silence went on forever, and then I began to debate whether to say "I have MS," or "give me another minute, margarita lunch."

I don't even feel I'm the same person I was before May. I hate looking inarticulate and stupid, hate it! I've read cognitive issues don't remit. Does doing exercises in memory work, or is it just to make us feel like we're being proactive? Ritalin? Provigil? I'm a little tired but don't have the fatigue others talk about here. I just feel I'm wading through some viscus liquid in my head.

[Tia1]

Sadly I feel that I fit into this particular group and it is distressing. I have the hardest time remembering what seems like simple things.

Today I was looking for patio furniture and wanted to check online clearance for one of my favorite stores and could not remember the name. I knew what they carried, where they were located, even certain furniture that I liked, but the name would not come.

I figured i would give it some time since I was browsing on line and it would come to me naturally, but it never did. After a couple hours, I finally call my sister and said "you know the store that I love on Sudley Rd., near Giant and Barnes and Nobles? What is the name?

Of course, she couldn't believe that I had so many details, but COULD NOT recall the name of the store. Does anyone else have moments that are so selective. This is bizarre!!

I have an appointment on Monday and think that I really need to talk to my doctor about this. That is, if I don't forget!!!

[bwmorris]

I guess I'm writing a novel here…

Of course, she couldn't believe that I had so many details, but COULD NOT recall the name of the store. Does anyone else have moments that are so selective. This is bizarre!!

I have an appointment on Monday and think that I really need to talk to my doctor about this. That is, if I don't forget!!!

Tia1, I have the same kind of circumlocution issues.

Since almost all my conversations are with the two people who know most what's going on with me (spouse and friend), when I can't find a word, I try to be as descriptive as possible (like you were!) and they can usually help me by guessing the word. It's not hard for them, because usually it's just a simple word like "beans", or I'm referring to something in a situation at least one of them was involved in.

About remembering things for doctor visits, I MUST go with an agenda written out, or I know I'll forget something or mis-budget the short time. I actually do this for my weekly skype call with my parents, as well!

I also usually type out a letter explaining what's going on, because I'm most often worn out by muscle spasms—more than usual—from sitting too long waiting to see the doctor. With the letter, I have the options of: ignoring it if I'm feeling well enough, lightly referring to it if I need to, reading it verbatim if I can't think, or handing it to the doctor to read if I don't have the energy or breath to talk.

Now if I could only get my doctor to actually listen…

macarolina, you originally asked about how to explain cognitive lapses to clients. I was reminded of a silly way my friends and I used to joke—way before my current issues—when we made a stupid error and it was obvious to everyone there. The person would jokingly say "Oops, brain fart!"

Now this might not be professional enough for your more highfalutin clientele. For them, I'm not sure I can offer any variant beyond "Please do pardon my cerebral flatulence!"

Of course, seriously, you could just say "I'm sorry, I'm just blanking on that right now!" Since everyone "blanks" on things now and again, hopefully you won't do it with any one client with such regularity that they notice.

macarolina, with your colleagues, you said you've already said something to them about MS cognitive issues, but want to give them a better idea of where you are with your particular issues. I like the analogy of construction (or demolition! ) detours.

If you latch them on to the idea that your thoughts sometimes have to take a lot of detours on your brain highways before they get through, I think they might understand more easily that sometimes there's no clear path for some information, pinballing around in your brain, to get through. (Sorry for mixing metaphors!)

I'm sorry you're having these troubles and frustrations, and I hope this helps.

dyin_myelin (love your clever name), I'm not sure whether the memory exercises you have in mind "work" (maintain? improve? cover up? ). I'm a bigger fan of coping strategies than exercises, though.

I can test coping strategies, and I can know right away whether they work for me—and I think you'll find that some are bound to work for you. Like justacowgirl using her smartphone for reminders (all of my calendar events have at least one alarm!), or repeating something to yourself for a while, with increasing durations between repetitions.

Maybe I'm a little defeatist in preferring coping strategies to improvement exercises, but I prefer to think of it as healthy acceptance. We're all in different places, though, so I hope you all find what works best for you!