Neurocognitive test discussion

ChristineRK

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Christine, good luck with the visit with the neuro-psychiatrist today. I'm also glad to know that I'm not alone in dealing with the uncertainty of slow progression. And Karen your advice is well taken. I have already taken care of a lot of the advanced directive/financial planning/voice banking stuff. It's the really big decisions, like do we sell the house, that I am unsure of.
Hi, Ken!
How have you been lately? Holding strong, I'm hoping!

Question for you and/or anyone. So, as you know I went to see a neuropsychiatrist for some testing as I felt I dropped about 60 IQ points and my memory (especially for me was becoming pretty bad). I took the test which went from about 8:15 until about 3PM. I was asked a myriad of questions and when I realized how bad my memory was I broke down several times during the test - it confirmed that 'something'' was wrong with how my brain was (or wasn't!) working. It is quite scary. I don't meet for the results until this coming Wednesday.

Has anyone else had a test like this and felt the same way? OR has anyone with ALS experienced 'bad' short term memory issues?

Thanks in advance!

~I hope everyone is doing well!

~Christine
 

ShiftKicker

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Christine, I am part of a study that has a neurocogntive component- I repeated the test every 4 months for a year and then will be once yearly for...well, I can't remember. These tests are exhausting even for those who are operating at 100%. It is definitely tears for me each time I take it, and I feel as though there is a down slope in my cognitive function- the repeating the strings of numbers (forwards and back) and the lists of words I find particularly difficult.

Did you receive the results of your assessment? Have you had an assessment before that you can compare your results to? These tests are exhausting and challenging at the best of time and I think it can be quite common to feel discouraged (I sure did)- I am sorry that it was so stressful. Worrying about loss is always so present.
 

ChristineRK

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Hi, ShiftKicker!

This was the first test I took with the urging of my friends and family - and myself realizing that I can't remember hardly anything. I don't get my results until Wednesday. May I ask what they diagnosed with you with after you took the test(s)? I really like the idea of doing that test every few months to kind of see where I am. Lastly, if they gave you 'bad news' - were you asked to bring someone with you to that appointment? Or is that completely up to me?

Thank you!
 

ReginaS

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I'd be scared about these tests too and then even more scared about the results. Wishing you all the best. Hoping that all the research being done brings some cure soon.
 

ChristineRK

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Thank you so very much, ReginaS!
You are very sweet!

~Christine
 

ShiftKicker

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Christine, I moved the discussion about neurocognitive tests to its own thread as it deserves its own thread!

Because I am part of a study, I don't get proper results, but can track my decline (??) by how I do each time I have the test. I do get vague and encouraging "You did fine!" comments from one of the administrators. My comments to you were less about my results and more comment about just how grueling and discouraging they can feel. They are an assessment, and push you as further than is comfortable, so I doubt many people, Mensa level or otherwise, walk away from these things feeling like they did a superb job!
 

ChristineRK

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Thanks for your comforting words, ShiftKicker!
 

Nikki J

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Like Shiftkicker I have had neurocog testing in studies. FTD is associated with ALS anyway and very strongly associated with my genetic mutation. They are long exhausting and stressful even if you don’t have ALS or any cognitive issues. The are also designed to push the limits of everyone even those who are “ normal” and baseline high functioning.

Some cognitive issues appear in about half of ALS cases. Often they are mild. The incidence of severe issues is much lower. Any loss is frightening of course but if turns out you have a little don’t panic. You have to consider as well that your testing was probably impacted by fatigue - that was incredibly long- and you were no doubt stressed and distracted.

Good luck on Wednesday!
 

KenM

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Christine I have not had any neurocognitive tests, only the basic memory test done at the quarterly consultation. I do worry about my memory and cognitive abilities in part because I am still working and a significant loss in cognitive function would put an end to that. As Nikki said, memory can be effected by stress and fatigue and other factors. Good luck!
 
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