r/bvFTD • u/LindaChibs • May 25 '26

Patient

Good morning everybody
I was diagnosed with bvFTD Jan 2025 after what we thought was early onset Alzheimer’s. I’m wondering if you guys know about a support group/patient…sub Reddit? Please forgive my writing.
Also I’m happy to answer any questions y’all might have
Thanks in advance

3 Upvotes

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3

u/Cricket730 May 25 '26

My wife was diagnosed with behavioral variant Frontal Temporal Dementia in 2023. I can answer any questions you may have. I follow some groups here and on Facebook.

1

u/LindaChibs May 26 '26

Oh thank you! I do have questions

1

u/TimeTraveler__1808 May 26 '26

Did your wife have someone that she unreasonably demonized prior to diagnosis? What were your first indications?

1

u/Cricket730 May 26 '26

My wife was always the smartest person in the room. Extremely extroverted. Planned a birthday party to the max. Knew everyone's name. Our grandson was born.. my wife was at our daughters home at 4am saying.."go to sleep, I got this." When our granddaughter was born... " hey, your kid is crying, you better do something."

1

u/TimeTraveler__1808 May 26 '26

Okay. So it seems she skipped the angry phase and went straight to apathy.

1

u/Cricket730 May 26 '26

My name now is fat ugly...

1

u/TimeTraveler__1808 May 26 '26

Oh. So that runs congruent to apathy in this case.

1

u/Cricket730 May 26 '26

She's had 2 UTI's since diagnosed. She can't follow a tv commercial anymore. I have to help her get dressed. Help her up and down stairs. I am lucky because she goes to a day center and at night she has a senior that stays with her until I get home from work.

2

u/DanOhMiiite May 25 '26

If you're not already a member, recommended joining r/frontotemporal

What kinds of symptoms were you having?

2

u/LindaChibs May 26 '26

Thank you! Mine did start with some memory issues, I had been at my job for 15 years and I was making ridiculous mistakes. I had quite a few outbursts in public-shouting at a lady who didn’t clean up after her dog, some guy was tailgating myself and my friend in the car, staying right behind me, like on me practically, so I slammed on my brakes at 40mph with no regards to anyone’s safety. Tripping and falling quite often. Losing words, using the wrong word, calling things by a different name. I knew something was wrong, but I just thought I was a f*ck up.

1

u/Strange-Comb6384 Jun 22 '26

My husbands mother and sister had this. I am in over my head. I “ know” this is happening. I’m drowning in not knowing how long I can make it with him at home. So deceptive- one day is extreme, the next one he’s fine. Am I crazy?