During this last week I have been put through two separate and unrelated cognitive test. One by my new doctor and one for researchers working for Mass General.

( The appointments just happen to line up this way )

Anyway, today I feel quite down as I did not do well in either one. The one is Boston was quite long and I really stunk that one up.

I write to ask if others have found this process to be upsetting too, and how they dealt with accepting things after. To be honest one of my emotions right now is fear.

Thanks,

Brett T



Edited 1 time(s). Last edit at 04/12/2010 11:20AM by Brett T.

What kind of questions are on the test? Is it written or oral? My dad did a "little" test in the neurologist office, but probably not like the one you took. They just asked a few questions, I remember the dr. said 3 words and asked him again like in 5 minutes, and he could only recall one. I'm sorry your upset, I know this must be hard for you. Fear isn't a pleasant emotion, and I hope you can find a way to work through it, maybe a little time would help. Thinking of you.

Thank you very much, rj for your thoughts. Most of the testing was verbal with different types of timed reading or reciting, and a lot of recall. There was some work on a computer too.

It was strange to sit before a kid who just got out of college ( who was giving the test ) who had his whole life ahead of him. I made some small talk with him and he was telling about all the different plans he had, which were all great ( and I am very happy for him / I do mean this ) meanwhile I was thinking how the hell am going to find my way out of this large building when this is all over.

If fact I joked about it and he did not bat an eye saying don't worry Mr. T... am here to help you with that, and he was serious. It really sucked, and after doing so poorly in almost every category I see now there was no way for him to know I was at least half joking.

I had another awkward moment with the Dr. who Howard knows, and ask me to say hi for him. This was all I was trying to do ( say hi ) but I could not recall Howard's last name at the time, and of course she can't talk about any other people she sees so, she just kind of looked at me while I was trying to let her know who I meant. It took me a bit to see she did know, but could not say so. My old self would have seen this right off. I fear after yesterday that guy is really gone.

Anyway, Howard I did say hi for you and you are right she is very nice. ( but with all the test I did that day we did not have much time )

My point in writing this is just to maybe show some insight as what this was like for me and to maybe get some support from you. Today/ this weekend I could use it.

Brett T



Edited 1 time(s). Last edit at 04/12/2010 11:23AM by Brett T.

Brett, I'm very sorry to hear this. I can only imagine how upsetting it would be. I have to admit that I'm not HD positve, but I too actually am beginning to worry about my memory/mind (I'm an old mom and I think that's part of it, but I also honestly worry about if there's something more going on). I just started taking blueberry pills. I need to start exercising too and I have a feeling that might help me. Are you taking any of the supplements? Maybe that might be worth a try. Or maybe ask your doctor about some of the possible neuro-protective meds out there. Another thing is to think about how you're functioning in the real world. In my opinion that's what really counts...not just some doctor's test. If you feel that you're having trouble at home/work too, think about if there's anything you could do to help yourself. I have started writing notes for myself and lists about things that I need to do. If there are specific things that you've noticed troubles remembering maybe ask others here on this site if there are some helpful strategies they could share...there are fancy electronic gadgets that have automated reminders/calendars/info storing. I wish I could help...this is all I can think of to say. I'm sorry.

Did they tell ya you didn't do well or are you feeling you didn't do well? I took a couple of the tests at the CoE myself... they are are hard! I feel I stunk them up.. they didn't grade mine though. I am not saying that to make you feel better... well I am pointing out to do that... but honestly... they are not meant to be done well. Some are really meant to confuse you.. it's just how fast they do that. As nearly as I could tell.. it's really just how fast you stink at them.. because everyone will stink. The red, blue, green one... alternating the names of color with the ink color.... being retarded would have been a step up for me...

Brett,

I've been through similar tests in the PREDICT study and a different series at IUPUI. I recall one where you have to recite as many words as possible that start with a certain letter. On one of them I drew a blank after two or three and just sat there thinking to myself I'm a member of Mensa and can't even do this simple thing.

I can identify with your frustration. I don't think I'm having any HD decline, however. I've been using a little machine called the Brain Game regularly for several years. It has 5 different number and word games that supposedly work different parts of your brain. There are all sorts of devices and apps that do similar things. Search Amazon for Brain Games.

Eric's red blue green thing is called the Stroup (sp?) test. That's an SOB for anyone.

Will



Edited 1 time(s). Last edit at 04/09/2010 05:16PM by Will.

I am just glad it wasn't seafoam, indigo and fuchsia.

I had a hard time just remembering the 3 words that my husband was supposed to remember. Not kidding! My 4 year old even beats me at memory.

I have heard some good things here especially from you, Will. I have not played that game but have been doing things like it in an effort to stay sharp. I too allowed the crickets to play when asked to name as many words as I could that start with the letter f, you know the f word did not even come to mind ( however it did plenty while trying to find the place, before I arrived )

Anyway, to be honest the feeling of utter confusion when trying to answer is what disturbed me more than not being able to answer. ( If that makes sense ) As, for the Strop test, there I did the best to let you know how well things went.

Thank you all for writing.

Brett T

PS Woops Eve, I actually set out to write back to you 1st. Your message was great, and I do agree about the real world compared to what this may mean, but I do not do so great in it either, unfortunately. Thank you for all your ideas and helping me find a way to do better there. I am not giving up by any means, I am just shaken up right now.

Hi Brett,

You do realise you suck more with these tests when someone is there waiting for the answers. I was a fast typist but when doing a test I was hopeless & made so many mistakes. The same if someone stood behind me at work waiting for a letter, I would end up asking them to go sit down until I had finished because every time I made a mistake they would go to point it out. I knew I had made the mistake but it was faster to finish the sentence then go back to correct it.

Under pressure none of us do as well. If you were given the test and go to another room with a cuppa and plenty of time you most likely would have done much better.

Whether you did well or whether you didn't, you walked out of that building the same person as you were when you walked in. Stressed out. No, just kidding - what difference does it make to your life if you can't think of words starting with 'f'. None at all. It's not like you will never be able to use words starting with f - you won't go to a florist and ask for 'a bunch of lowers' will you?

I find the frustration (there's a word starting with f) not being able to remember names of things & trying to describe the item to someone else who knows what I mean but also can't think of the name of the item either. It's called age, just remember that pressure brings stress which brings forgetfullness (hey, another f word ) so don't take these tests too much to heart.

Try to live each day separately, tomorrow you will think of lots of words that you couldn't think of before because you are more relaxed. I certainly wouldn't like to be going through these tests, I would get a big F for FAIL.

Remember these words next time you are asked.

Love

Debbie

Debbie, you are the best. Where my head is now, from the time I left that building, is a completely different place. The sun is out here and my son has his 1st baseball practice of the new season. I am not coaching him this year ( for the 1st time ) but I will be going early with him and working out a little before hand, with just him. He is very excited to meet me there and so am I. ( It's too bad they could not of asked questions pertaining to hitting & fielding, those I know )

Brett T

My Husband also had 5 hours of cognitive testing when we were trying to find out what was wrong with him....he said he would never do it again...it totally stressed him out but it did show a lot of cognitive damage....from those test he was told to stop driving and working....but we already knew he was struggling so much with both....but it was a shock none the less....the next day the HD positive test came back with 45 Cag's....Sorry for all your going through....

Our son is also playing baseball today!!! he loves it....hope you win!!!

Oh now Brett, you are doing so much better already. You used the words from, first and for. Well done. Hehe Oh another - fielding.

I love the fact that you are going to baseball with him and equally glad that he is excited that his Dad is there with him. He doesn't care about those tests, he just wants you and you sound the kind of Dad I had who took interest in their kids and were loved in return.

Your children are your greatest achievement, and they obviously love you dearly from what I've seen and heard. Maybe when you've finished with them you could come to Aus and see if you can get me to hit the ball just once out of 100 - rather than me squinting and running as the ball travels towards me.

Buddybird

Thank you Nila I always like hearing from you.

Buddybird be careful what you wish for. You never know in 2011 I could be showing you how to hit like Ted Williams.

For now don't worry about hitting only one 1 out of 100, the best only hit 30 out of 100

-Brett T

Brett

I have scheduled myself to go through those awful tests in June. It has been several years since I first took them and I feel like I am changing a bit. I am 39 with a CAG of 44. My mom was symptomatic at 42 so I am very worried. I work full time and carry the benefits for my family. I understand your frustration with those tests. I remember how hard they were when I took them and am not looking foward to taking them but I feel i need to know where I stand. I am very fearful that it will show a change and start i am starting to decline.

Since the weather is now getting a bit warmer I am going to start exercising more so I am hoping that will help.

Take care - enjoy your time with your family.

Stacy-NJ

I only like tests that I KNOW I am going to do well on . Many tests after 5 minutes make my head numb . Not literally but figuratively . So I am proud you did the test . I did a fields test for my eyes the other day , and that stressed me out . The DX. said I did well , but it still stressed me out . db

I can totally see how this could upset you, but so glad you're doing better now!

I hated the questions & 400-question scantron test at my pre-testing psych visit. I do plan to participate in PREDICT soon, which would probably be more similar to your experience; will let you know how that goes....

Brett-

I just read this now, probably should have read it earlier... more of me
playing ostrich. Got a good laugh at the crickets with the F word question...haa haaa. You?? Get outa here!

Debbie, your a sweetheart! I got to meet Mr. B the other day and we were talking about you. (Honestly, I have no memory for names and stuff... so I had no idea...til now).

He didn't seem depressed after this round of tests. However, when I was trying to help him navigate over the phone I very comfortably was yelling at him like he was a member of the family. HAA HAA.

I think I have avoided some of the trial stuff because I am afraid I will get "the look" (meaning I am stinking it up) or flat out told that I am doing bad. I have only seen my Neurologist twice, once a year post testing. I think I have to probably go see him now... with a few issues that have started... could be HD/Could not... part of me is indifferent to if it is or not. I know the tests in his office though were pretty much the same as drunk/DUI tests. Walking the line, "don't let me push you over" and one hand slap clap snap thing that kind of blew my fried little mind. I was so nervous about going in, nervous about the HD...I had to tell him I was already clumsy before HD.

Luckily I adore the doc, so this year's appointment was better... and he had med students so when I had to walk the line, I pretended I was on a catwalk and turned around and the end and posed. Ha. Doc knows me well cause one of the students said "Yup, you called that one"



~ Laura Q.