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Bellevue16 Asked June 2023

Anyone here with FTD or looking after someone with it?

Would love some details if possible, just to read others peoples take on this disease and get some advice

PandabearAUS Aug 2023
My husband was 64 He is now 68 and been in FT care for just on 4 yrs. It took yrs to get this diagnosis as he had other issues as well. Eg obsessive behaviours and such which could no longer be hidden once the FTD took hold we went through all manner of opinions Depression Sleep apnoea Bi polar Parkinson’s. FTD was confirmed when a neurologist performed a specific brain scan which showed lesions on his brain and shrinkage. Be prepared for a long hard journey. Educate yourself and get ready to fight The most important thing you MUST do before a written diagnosis is to get financial POA and Medical Treatment Decision Maker. Get authority on everything from banking. Credit cards. Rates energy bill and even the phone and internet and streaming services

i am more than happy to answer any questions you might have. I live in Australia.

makayaya Jun 2023
LeaLonnie1...
Oh my goodness... I just checked the FTD Support Forum and it is really helpful. Thank you so much for sharing this!
lealonnie1 Jun 2023
You are most welcome. Best of luck

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Llamalover47 Jun 2023
Bellevue16: This website may help you - https://www.theaftd.org/

makayaya Jun 2023
My husband has both FTD and ALS... ALS diagnosed at age 68, FTD diagnosis at age 69... he is now 72. Both diseases have progressed fairly steady until just recently. He has had a rapid decline over the last month or so. I would be more than happy to discuss and have an outlet for myself.
Caregiverstress Jun 2023
I’m so sorry. I lost my husband to ALS 5 years ago. He was 54 years old. Thankfully he never developed FTD but there were days I wished he would have so maybe he could forget he has ALS. IMO the worst disease a person can get.
Peeps83 Jun 2023
My brother was diagnosed at 58. He is now 66. I will try to answer any questions you may have.
Bellevue16 Jul 2023
Thank you can you tell me what his first symptoms were and if he eats a lot and had apathy
lealonnie1 Jun 2023
There is an online forum you can join that's devoted exclusively to FTD dementia:

https://www.ftdsupportforum.com/

There are lots of resources and chats there for you look over. I hope it's helpful.

Best of luck to you.

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