Penn State re: FTD/ALS testing

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Would like to have seen what the testing involved. I know that Dr Loemen-Hoerth's tests were really very basic... "How many words starting with D can you name in a minute?" "How many animals can you name in a minute?" Glen used dog and dinosaur both times.. I think that was cheating! She already had the results of his brain scan, which showed frontal lobe atrophy (and was misread by a Kaiser physician but that's another story). That combined with a behavior questionnaire I had filled out prior to the exam.... really a fairly short and painless diagnosis process once they were looking for the right thing.
 
Katie, I was wondering if the diagnosis of FTD helped in any way? I think my mother has a pretty advanced case of FTD. She could only name "finger" when asked for things that start with F. And I think she only got "dog" for animals. She couldn't recite the alphabet and had varying success/failure with some of the other tests. But we really didn't get any advice about what to do from the psychologist. I have a terrible time getting my mom to comply with any of her medical instruction like cough assist or suction. She refuses to discuss PEG even though getting her to eat properly is impossible and she won't get bipap either. In her mind she's confused both of these with life support and I can't convince her otherwise. Wondering what they told you to do?
 
Carl... the main help from the FTD diagnosis was an understanding of what was happening. The idea that this wasn't just Glen being a jerk but caused by an actual mental illness made it much easier for Kevin and I to cope with. Honestly.. knowing this person I didn't like very much wasn't our "real Glen" was a relief! Compliance is a big issue. The psychologist Glen had been seeing was useless. She said Kevin and I weren't nice to Glen. I talked to our neuro who referred us to a psychiatrist with a special emphasis in neurological issues. She was able to adjust Glen's psychiatric medications to where he was at least reasonable to live with. He too refused PEG. He had a bipap but used it maybe three times. He was on a combination of depression and anti-psychotic meds (Celexa and Seroquel) and a simple e-mail to the psychiatrist and she'd adjust his dosage. This helped keep the hallucinations under control, and he was far less likely to do things like open the car door on the freeway. (He did that during my brother's funeral. Ack!) Did they make him sleepy and out of it? Yes.. but it helped us to keep him safer. Wish I could give you a more positive answer.
 
Katie, thank you so much for the answer. I guess I'm having a hard time adjusting. It just seems less and less like the person my mother was is still around, so I relate to what you are saying there. It's kind of like my mother's body and memories are being controlled by a child's brain. Really alarming how fast it is happening. I desperately want to keep her around as long as possible, but I just don't see how I can do it without her cooperation. Luckily my mom isn't bad tempered, just extremely willful and not really able to grasp her condition or understand how to act in her best interest. Mostly it's just terrible heartbreaking. Thanks again, we are going to our second clinic in a week so I'm trying to figure out what kind of help I need to get.
 
Oh, Carl! I just want to wish you good luck.

Thank you Katie, for all the info you have provided! It is so very helpful!
 
Wow, am I ever glad/sad to read this thread.
I have been thinking that I have to quit my job just to be with Tom 24/7 to try to control his mouth!
He torments us all, character assasination, threats, unreasonable expectations and he has a vendetta against a neighbouring family that worries me so very much.

The sad truth is that I cannot wait until he loses his ability to talk. I know the GLARE will intensify, but we won't have to listen to the abuse anymore. Where did my man go?
Why do we have to be doubly afflicted with ALS and the demon?
I have got to talk with Myrna Moore at Sunnybrook, we really need help.
 
Be careful what you wish for.......we don't have speech anymore, so he just DOES stuff. Like, he tries to tell me that he wants me to park in a certain spot in the parkinglot, but I can't understand him so he just reaches out and yanks the steering wheel out of my hands! NOT COOL!
 
Cubcake... we live in San Jose and my brother's funeral was in Fremont. My poor son was on his way to the church on 680 during commute time when Glen decided to open the car door! Thank goodness for seat belts! You never really appreciate the importance of inhibition to human survival until you live with someone who's lost it!
 
Good Night, Katie! What a frightening experience! I think this may be one of the hardest parts. You can't explain to them what they did was wrong and why.....there is no understanding or remorse. And I can't show any excitement either, that just agitates him. I, ever so calmly, through gritted teeth, tell him that "that is NOT ALLOWED. Grabbing the steering wheel is NOT ALLOWED. Can we agree on that?" So far, that works.

I thought about having him sit in the backseat, but I remembered your saying something earlier about your Darling Glen opening his door (didn't know it was on the freeway, or on the way to a funeral! Geeze, or with his son at the wheel!) and I don't have child locks back there.

I wonder what's next....
 
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