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AveMaria123 Asked June 2018

My husband is 55 and seems to have Frontotemporal dementia. No Dr. will verify it, but SOMETHING is clearly wrong with his mind. Advice?

I should know. I live with him. It's been 2 years. He can't do the work that he did the last 20 yrs., and now he can't work under someone like he has done the last 2 yrs. He took himself to his PCP to begin with two yrs ago because he knew that he couldn't figure numbers, etc. on the job. We have really gotten the run-around as far as diagnosis from two major universities in the our area. My family and his family and our two adult girls waffle between knowing something is wrong with him, and talking like he is OK. He is not OK. I am struggling with all this. We have taken a 3 month break from Drs and tests, etc. but he wants to start a new work project but he may not be able to do. I told him that to be able to invest any of my money, he would have to start over with the testing which is not going over well.....and I don't blame him but I am trying to look out for our financial future. Any advice?

Ceecee65 Jun 2018
Has he had an MRI or CT scan of his brain? Have you been able to see a neurologist? I'm thinking of something ominous like a tumor and an MRI would rule that out.
PCPs are taught "If you hear hoof beats, look for horses, not zebras." It sounds certain that your hubby's PCP is dead set on horses and not willing to consider zebras.
I hope you get your answers soon so you can begin planning.

Masonnic Jun 2018
there are some very good examples on you tube about frontotemporal dementia its sad but some doctors miss it my husbands doctors missed it at first but was diagnosis at 57 after being told it was just depression and getting lost one night and had a car accident I got more info on you tube than his doctor

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geewiz Jun 2018
Regardless of an official diagnosis, you clearly see changes and the symptoms. Have you been to Duke's memory care clinic, or similar? How about a gerontologist?
Does a new project for him require an investment of funds? If so, I agree that caution is required. Is there a trusted co-worker that can partner with him?
A friend of mine had her husband in a similar position. He had 3 car accidents and the last one totalled the car. It was less than a year old!
I urge you to read up on this disease and for the next visit, hand the office a letter from you stating all you have observed. This will help with the diagnosis. Good luck and keep us posted.

OldSailor Jun 2018
My wife has FTD with aphasia. It took us just a rather short time to be diagnosed. It really only took two visits to our PCP and finally doing the tests in his office to get referred to Cleveland Clinic for diagnosis confirmation and begin monitoring.
DW came home one day and said she got lost and had driven about 9 miles out of her way before recognizing anything and getting herself headed in the right direction.
One visit to CC and a scam confirmed that her frontal temporal brain had shrunken a lot and that there were other spots in her brain that were being affected.
Sadly she was too far gone for any meds to slow this any. She no longer has a drivers license, cooks, cleans, does her laundry, even eats differently. And so many other things.
It did took a neurologist at CC to confirm what was wrong with her. Now it is just wait and watch for other symptoms and health changes. And to do more to help her with her daily hygiene and dressing.
I wish you the best with this journey. It ain't gonna be fun.

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