Annika Roll
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onarolll.bsky.social
Annika Roll
@onarolll.bsky.social
Product designer & co-founder of Cure MAPT FTD
It would explain it though if she was drinking that much and now she stopped, she may sound more cogent now. Also those people filming her were trying to catch her at her worst and display her for everyone to see.

All of the ways she's behaved line up with FTD symptoms
January 17, 2025 at 12:39 AM
The "body-mind" thing is different with FTD - it's like you're aging backwards. You don't have awareness about what's happening to you. You stop being able to control your impulses. It's a slow decline that takes many years and she's not in a bad state right now so her conservatorship is too extreme
January 17, 2025 at 12:23 AM
People with FTD can have good days and bad days. It's common for folks to sound completely normal for an hour or two, then the next they struggle to speak and are obviously cognitively impaired. My mom has this disease and is exactly the same. This will get worse and there is currently no treatment
January 17, 2025 at 12:15 AM
Agreed, in no way should that be considered emotional abuse.

I can also vouch for removing Internet access for people with FTD (my mom has it) It's common for people with FTD to make poor financial decisions (like gambling away their savings). She may need Internet access removed if that's a risk
January 17, 2025 at 12:00 AM
Yes these are red flags. Seems she is at an extreme facility and she should be able to communicate with her family etc.

It is necessary for her family to speak up so she can get out of this harmful financial situation.

However her FTD symptoms are real even though she seems cognitively normal
January 16, 2025 at 7:12 PM
Even the rich don't have access to that kind of care in this situation. There are no treatments or even clinical trials testing treatments for people with MAPT FTD.

It's true though that in the US without massive amounts of money, getting long term care is very difficult unless you have medicare
December 27, 2024 at 8:57 PM
I think this is why patients need to advocate more for themselves. Linde is speaking for herself and for all people who have familial FTD. Researchers, like all humans need stories like Linde's to connect with the pain families with MAPT experience
December 22, 2024 at 10:03 PM
Also please note this is not Alzheimer's disease
December 22, 2024 at 9:55 PM
If you read the article it clearly states that she has a genetic variant. While sporadic cases can occur for a variety of reasons, MAPT is caused by a genetic mutation. For those with a MAPT variant, there is a 98% chance of getting FTD. This is not caused by benzos. I recommend reading it
December 22, 2024 at 9:52 PM
Misogyny is always an issue in women receiving a dementia diagnosis. In my experience physicians tend to believe the symptoms are either exaggerated or due to menopause. Many people, especially women get misdiagnosed and it can take years to get the correct diagnosis
December 22, 2024 at 9:07 PM
This is genetic not caused by meds or prescriptions
December 22, 2024 at 9:02 PM