Cognitive and Behavioural effects higher than we used to be told

[affected]

I found this article helpful to me. For CALS, dealing with cognitive and behavioural changes is so very difficult, especially as the PALS does not recognise that changes are happening.

To see research is revealing the incidence of changes is far higher than we were being told 10 and even just a few years ago is a great step forward to me. If we don't realise this is part of the disease process, it is so very hard to deal with.

https://mndresearch.blog/2018/09/18...EVqjXw2qsy-x7QuaaVDCnmKElTZ7_0Px90XBoHhJfmCsA

 

[beauty4everyone]

:neutral: Thank you for this most informative article. I'm wondering about the apathy dimension.
*When caregivers don't listen to, dismiss or deny requests, one can become apathetic in a short period of time.
*When it's difficult to acquire things, it's easier to do without.
I embraced that attitude the last couple days. Apathy can be an effective coping mechanism.
If it won't make a difference, don't ask.
* The "letter check" puzzled me when asked to do it. Couldn't tell if it was pronunciation, speech, recall, or what.
*Actually, in some ways it's not a fair test. We usually don't think that way. With spell check, our word choice has become limited.
*The examiner told me a word I used, wasn't a word. It is! THEY just didn't know it.
*I've been forewarned. I've taken up reading the dictionary again! Thanks much. May blessings abound. B. 8)

 

[dldugan]

Thank you for the article. I have sent to my caregiver so if I exhibit these behaviors in the future she will understand that it is ALS and not her care that is at fault.

 

[Nikki J]

When I have used a word with which an examiner was unfamiliar they asked about it after the series and seemed satisfied when I defined it though they may have verified later. They also check that I was truly using homophones rather than repeating. Having been tested many times by a number of different people I find it interesting to see who questions what. Certainly examiners vary in vocabulary size

There is a “ normal” number of words people can do which I believe varies by educational level a little. As you say, listing is not usual behavior but unless you administer the test profesionally it is a strange thing to have to do.

 

[KimT]

I wonder if they did a study on CALS what they would find. CALS survive on little sleep, extreme stress, and a general upheaval of their lives.

I have experience with anxiety and depression (in myself and my family long before ALS). I suffered a severe depressive episode in 1999 that rendered me almost unable to comprehend anything written. It was scary but much different than when I fell running in 2013 and had a TBI. That insult to my brain reduced my IQ from 160 to 100. It took me two years to raise it 30 points and I never got it anywhere near base level.

Nikki, you're right on the educational level (AND cultural experiences such as traveling.) Even though I was slow on all the other tests, I excelled on the general knowledge. I had a hard time with multiplication (not good for a practicing CPA) but could recognize famous works of art, identify countries and state their capitals, and I got all the science questions correct.

My point is that I think (besides FTD) there are lots of factors that affect cognition and behavior in the general population and even more in highly stressed people or aging people. I'm glad it's being studied.

 

[affected]

My Chris passed that listing test with flying colours.
He was behavioural variant.

He would not have passed that test 6 months later as his language also diminished.

These tests can often work best when administered over a period of time to measure changes.

The best thing is to discuss behavioural changes with the CALS if they know the PALS very well as the PALS won't detect they have changed, and if it is pointed out they will dismiss and justify.

FTD is about patterns of behaviour that grossly deviate from how the person was previously.
Beauty I will note that nearly always, true full on FTD starts before the ALS symptoms are apparent. You cannot then say a change is situational as the behaviour changes are not related to dealing with the illness. Of course every PALS experiences many very deep emotions in coming to terms with this disease, and dealing with it. I have no idea how I would cope, my respect for PALS could not be higher.

 

[affected]

Great points Kim, and yes there are many things that affect cognition and behaviour. I'm very glad it is being studied too

 

[KarenNWendyn]

Tillie, thanks for the informative article.

Kim, all I can say is that my IQ was > 80 pre-ALS and now is in the 60’s.

Oh wait! Maybe that’s what the BiPAP is for.

 

[KimT]

Karen,
With an IQ of 60, that qualifies you to be on the President's cabinet. Imagine the fun you'd have:lol::lol::lol::lol::lol::lol::lol::lol::wink::wink: