How do determine FTD?

[brooksea]

My husband may just be acting strange from stress, but how do you determine if one has FTD?

He keeps repeating things to me, but still seems to be cognizant of what is going on. He even helps coach basketball at a local church.

He has always been forgetful and has ADHD, but this seems different.

[BethU]

CJ ... I'm not sure of any of this, but from what I've read, FTD is not like Alzheimer's ... it's not primarily a memory problem. There are different kinds of FTD depending on which side of the brain it's on. One kind affects behavior ... patients may make socially inappropriate comments or actions. The other kind affects language, forgetting words, etc..

That's really simplistic, I know. This is a subject I'd love to know more about, as I think that may be part of my condition, too.

[Al]

here is some information on FTD.
http://pdsg.org.uk/clinical_informat...oral_dementia/

AL.

[ptich]

From what I read, ALS is often accomanied by other brain problems - more than just Motor Neuron area seems to be affected. "brainhell" in his blog wrote that he had some word confusions, and MRI found lesions both in Motor Neuron and speech area (which is, apparently, adjacent to the motor cortex).

[brooksea]

Thanks for the link Al. Sorry I asked!

God must have a really warped sense of humour to throw FTD in with ALS!

[sharonca]

My mother had FTD (Pick's disease type). If you had two people - one with ALZ and one with FTD together you could definitely see the difference. FTD is not the whole brain it is just the front and what is controlled by the frontal lobe. Speech, balance, coordination. And then you throw in the memory issues that come with it. With my mother we first assumed it was ALZ because she could not remember how to do things that she had always done like sewing, planning a meal, how to use the garbage disposal (yikes). FTD also can have the lack of social skills thrown in. But when losing speech she lost words not the ability to form words. ALZ people babble, FTD people usually just cannot think of words. My mother could say shut up and no right to the end!

Sharonca

[Al]

You know what's scary CJ? FTD never entered my mind. Reading that article made me think I may have a couple of those symptoms but in a very small amount. Hope I don't end up like the twitchers that convince themselves they have ALS.

AL.

[sukilou]

My ALS neuro told me that 30% of PALS develop FTD. Because I have a small meningioma in my right frontal lobe, I asked her if I was more at risk to develop
FTD and she said no. But I do pay attention when I have trouble thinking of the right word to say, so I guess you can add me to the "worry wart" list.

[sharonca]

Since that research link refers to Pick's I thought I would add some more info... From what I have read on the research papers about FTD and ALS and Pick's Disease FTD and ALS is that Pick's form of FTD is not associated with ALS. FTD and ALS are connected somehow through the TDP-43 protein misfolding. Trust me I barely understood the reports but I got that much! I was very scared about the FTD/ALS connection because not only did my mother have Pick's but her aunt had it as well. Since this is a very rare form of FTD it seemed more likely that there could be a hereditary component. I do have quite a bit of trouble finding words but am hoping that that is due to stress - worrying about finding words and what if I get the dreaded twosome.

I have listed on my advance directives how to handle things (vent,etc.) if I have dementia as opposed to just ALS.

Sharonca

[swi71]

CJ--
I know you're getting a lot of information here--but I can add some additional specifics. My husband had many symptoms that we didn't know at first were FTD. He showed personality changes (changing clothes and color preferences, not calling when he was going to be late from work; secluding himself from the family). He lost the ability to make logical connections (if the dog was in his cage, the rest of the family must not be home; if the shoes are hard to get on and way too tight, they must not be mine). He would go out of his way to talk to strangers and made odd comments (like giving unwanted advice). He had always been somewhat OCD, but this got much worse (like he got upset with me for not sorting the laundry in a specific fashion). Eventually he became dyslexic--telling my son to turn left instead of right when he gave him directions. His written communication showed a loss of understanding of proper syntax and punctuation (he was a nuclear engineer and wrote constantly for work). He would say things out of the blue like he had either been in the middle of a conversation in his head or like he thought he had already said something out loud. He became stubborn and very hard to reason with (he fell down the basement stairs one day, but I couldn't convince him that the stairs were dangerous and keep him from bending over on them after that). His reaction time slowed significantly. He also had lability (he sobbed through our son's wedding and a friend's funeral).
He did not lose the ability to recognize people and could still perform part of his job--I had to make him quit that because of all the safety issues.
I hope you aren't experiencing this--but if you are, I hope you can see it earlier than I did. I sure would have coped better if I knew it was all the disease and not just his reaction to the disease.
Sharon