When there is a rock in our path, we can stumble over it or use it as a stepping stone.

Friday, July 29, 2011

Cognitive Reserve Can Make It Harder to Get a Diagnosis in Early Onset Dementia

I found this blog entry about early onset Alzheimer's very interesting.   Unlike me, Brian was apparently a numbers whiz when he began to deal with the effects of dementia.   Just as my being an avid reader since I was a very young child (see my Cognitive Reserve post) seems to have given me some protection against how much verbal (written and spoken) ability I likely would have otherwise lost by now, Brian's facility with numbers seems to have given him a mathematical cognitive reserve as ten years after his symptoms began to appear his math skills remain sharp and he works "intricate number puzzles" for pleasure.

Given how hard I had to fight to get the neurologists to take me seriously that something was going wrong in my brain because I could still speak and write so well, I am hoping that this news about the role that cognitive reserve plays about slowing down the loss of the areas in which we have always been strongest (in my case words, in Brian's case math) will make its way into the neurological community and make it less frustrating for those of us who know something is going very wrong in our brain.

It is hard enough to cope with the symptoms of early onset dementia when trying to hold down a job and live a normal life even as you are having to compensate more and more each day to be able to continue to do routine things, without having to fight the doctors to prove that "no, I am not depressed.  No, I don't have a psychiatric illness.  Something is going very wrong in how my brain functions."

I have also learned that for myself and others like me who once had a genius level IQ, it is hard to be taken seriously by the neurologists as while we can tell that we are losing ground, we might have only deteriorated to the point of now testing at a "normal" level and it is hard for the neurologists to believe that there is something wrong with someone who tests normal.     I wish neurologists would look at deterioration within an individual instead of only comparing someone to the general population to decide whether or not they should brush you off as having psychological problems.

I can only remain thankful for tests like CT scans, MRIs, Pet scans, etc. as once I persisted enough to finally get the doctors to order the tests for me, they had the proof I need that I was telling them the truth - my problem was not depression (yes, I was stressed and frustrated at having to fight to be believed, but not depressed) but actual physical deterioration of my brain as shown very clearly by things like how many black spots there are on my scans where parts of my brain have simply atrophied.


Karen said...

Hi, I found your blog via Joe's Living With Alzheimer's blog. (Can't remember his last name.) We have several similarities, I'm 46 and believe I might have vascular dementia, but they keep telling me that I don't meet the criteria for diagnosis. I also have a high IQ, fancy degrees, etc., and like you my strength is verbal, and in that area I still test at 98th percentile, but with other functions it's way below 50 percent. I also have physical issues, including arthritis. I'm not housebound but I don't get far at all without a car.

So you're a good person for me to know, and it's also very good to know that 11 years on, you feel the deficits more, but you're still able to blog (and write at a very high level). If you'd like to chat, please give me an email or something to get in touch with you privately. I'm still very much 'in the closet' with regard to my mental issues. People don't like to hire lawyers with dementia. :)


Stumblinn said...

I need a way to send you my data as while so far everyone who has come to visit my blog has been wonderful, I know the sad truth is eventually someone will find it who won't be so nice so I don't want to publish my email address directly on here.

Do you moderate comments on your blog? If so, I can send you my email address that way and you can just delete the comment instead of publishing it.

If your scans are showing a lot of black spots where a bunch of pieces of your brain have died off (the way mine do) then I suggest you talk to your doctor about the cognitive reserve research that can help to explain why are still functioning so high verbally.

Did you see the link in one of my other posts written by a doctor with an early dementia diagnosis? And another post (the one about math skills) has a link to someone who was still working for awhile with dementia because his math skills were intact. My brain is too fuzzy today to look up the exact data but they are recent posts. I need to rest now, but will be back later.

Karen said...

Thanks for your reply. Yes, I've checked out the other blogs that you mentioned.

I don't blog. Are you on Facebook? Or else I can set up another email address just for this conversation and post it here.

Stumblinn said...

I'm waiting for Google + since I use gmail and gtalk and blogger (also a google product) already.

I moderate comments on my blog (so that I can delete spam comments) so you can put your email in a comment on here and I can delete it after I see it so that no one else will ever see it.