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Does anyone have or know anyone with FTD and if so what symptoms did you first see before you got a diagnosis.

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My wife's first symptom in 2020 was memory loss. She was 56.
Formal clinical diagnosis of FTD 2021.
Geaton777 post above is accurate.
3yrs later, severe aphasia, extreme behavioral issues, most all the issues listed above...
All drugs seem non effective or very short term relief.
Prepare yourself for this journey emotionally, legally, financially -there are no words for whats to come should this be your family's path...
Engage an elder care lawyer. Find a social worker. Develop a support network with family and friends...
Sorry to be so blunt-but you need to prepare now.
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Ariadnee Aug 2023
So sorry you're going through this.
Your advice is perfect, not blunt when it is the truth.
HUGS
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My husband has FTD. Formal diagnosis two years ago. Obvious symptoms a year prior.
He was struggling at work. Having a hard time using his computer. Blaming department heads for everything. Sent me oddly worded texts. Fell out of bed a few times. Thrashing about while sleeping. Fell a few times. Hands were shakey. Hard to have conversations with him. Driving was becoming difficult. Easily irritated.
Work told him to take a week off. During that time he had a series of hallucinations. One of which was enough to take him to the Emergency dempartment. Imaging done. Spinal tap done. Basic congitive word test done. Couple days later at the follow up visit with a neurologist, we were told he had FTD-which was quite evident on the MRI imaging. He was not allowed to go back to work or drive a car that day. A year later a PET scan, the very detailed images of the damage to his brain broke my heart.
So....he's been pretty good for a few months. I know that will change. As others have suggested-get all the legal stuff done, elder specialist lawyer, taxes (there may be deductions for medical expenses), social worker. I've completed at least 7 caregiving research studies as a participant-because I want them to know how much we're struggling as caregivers. There are Zoom FTD support groups-I belong to two. They're great. Be prepared to lose friends and family as a caregiver. Not everyone is interested in helping-that's ok too. Just don't fret about it, use that time to dig for more very scare resources, contacts, information, help and other forms of social support.
Tough times don't last, tough people do.
Dealing with difficult family/friends? I can change-they don't have to.
Roll with it, or it rolls over you

Those are some of my mantras to get through this. This is not my first stint as a caregiver. Took care of my mom who had end stage cancer-that was easier than dementia-much better support systems, information, and medicine/treatment light years ahead of what passes as medical care for dementia-which is mired in the Middle Ages-if that.
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KNance72 Aug 2023
Big Hugs for you and your husband
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Symptoms:

Signs and symptoms of frontotemporal dementia can be different from one individual to the next. Signs and symptoms get progressively worse over time, usually over years.

Clusters of symptom types tend to occur together, and people may have more than one cluster of symptom types.

Behavioral changes:

The most common signs of frontotemporal dementia involve extreme changes in behavior and personality. These include:
Increasingly inappropriate social behavior
Loss of empathy and other interpersonal skills, such as having sensitivity to another's feelings
Lack of judgment
Loss of inhibition
Lack of interest (apathy), which can be mistaken for depression
Repetitive compulsive behavior, such as tapping, clapping or smacking lips
A decline in personal hygiene
Changes in eating habits, usually overeating or developing a preference for sweets and carbohydrates
Eating inedible objects
Compulsively wanting to put things in the mouth
Speech and language problems
Some subtypes of frontotemporal dementia lead to language problems or impairment or loss of speech. Primary progressive aphasia, semantic dementia and progressive agrammatic (nonfluent) aphasia are all considered to be frontotemporal dementia.

Problems caused by these conditions include:

Increasing difficulty in using and understanding written and spoken language, such as having trouble finding the right word to use in speech or naming objects
Trouble naming things, possibly replacing a specific word with a more general word such as "it" for pen
No longer knowing word meanings
Having hesitant speech that may sound telegraphic
Making mistakes in sentence construction

Motor disorders:

Rarer subtypes of frontotemporal dementia are characterized by problems with movement similar to those associated with Parkinson's disease or amyotrophic lateral sclerosis (ALS).

Motor-related problems may include:
Tremor
Rigidity
Muscle spasms or twitches
Poor coordination
Difficulty swallowing
Muscle weakness
Inappropriate laughing or crying
Falls or walking problems

Source: https://www.mayoclinic.org/diseases-conditions/frontotemporal-dementia/symptoms-causes/syc-20354737
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The Association for Frontotemporal Degeneration
Great website. Lots of information. They respond to emails and phone calls in a timely manner too. Don't know if the link below will work here.

https://www.theaftd.org/?gclid=Cj0KCQjw0IGnBhDUARIsAMwFDLk-7bF0DwtjWwcKelt7xIIUoXZCOUKlpjlnGD4GbckriJa67VNeGnMaAgcGEALw_wcB
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dkiely33 Aug 2023
It is: https://www.theaftd.org

You don't need all the code after that.
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Bumping up for answers.
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For us, it was new and unusual behaviors and personality change. A positive, happy, extroverted, supportive Christian man started heavily drinking, losing jobs, becoming very verbally aggressive, using foul language, being mean and thoughtless, poor judgment, no empathy for anyone else.
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Bellevue16: Per Google - What are the early signs of frontotemporal dementia?
The most common signs of frontotemporal dementia involve extreme changes in behavior and personality. These include: Loss of empathy and other interpersonal skills, such as having sensitivity to another's feelings Changes in eating habits, usually overeating or developing a preference for sweets and carbohydrate
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AlvaDeer has referenced FTD Zoom support groups I've mentioned for the original poster here. They can be found on either the AFTD website or on the Alzheimer's web site. I think there are more than two, the ones I use work for my schedule.
I do not know if I am allowed by the groups to post their information on a public web site. Which is why I've referenced AFTD or the Alzheimer's web sites as the primary starting points for these groups.
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Any noted behavioral or physical changes should be assessed by PCP first or. Geriatric Specialist. S/ S can often be associated with multiple different conditions; for example some S/ S that may present as dementia could also be a brain tumor or other neurological illnesses.
Get the patient to an MD or ER if you think urgent.
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My husband also has a form of FTD, he has Primary Progressive Aphasia (PPA), the non-semantic type. The first symptoms I noticed was that he never completed a sentence (he was a former teacher). He twisted words around; said "N" when he meant "Yes" and vice versa. His hands shook when he wrote; could barely write his name. I could tell he lacked empathy for me and our adult children and grandchildren. Took him to his primary care doctor because at that point I already did some on-line research and knew that he had PPA just by the descriptions of the symptoms and after a long visit with neurology, I was right (unfortunately). That was 7 years ago. Today he can barely speak, garbles his words, has trouble with executive functions (i.e. reasoning, problem solving, social interactions, etc.) and is anxiety ridden all the time. I no longer allow him to drive ( of course, he
hates me for that). He is no longer the wonderful man I married. It is a terrible disease - I feel like I have already lost him. He is moody, has obsessive behaviors and repeats the same words over and over again - yelling at me daily. I am sorry that you may have someone you love with FTD. It is insidious.
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Ariadnee Aug 2023
Disclaimer: this is only a suggestion. I am not a doctor. Just wanted to share this information.
Through a dementia support group have made friends with a woman whose husband has FTD. For a long time she waited to try using medication to ease her husband's symptoms. He yelled a lot. Pacing. Irritable. Two weeks ago, she'd had enough. Talked to his doctors and he is now on a very, very low dose of Seroquel. Has made a world of difference. She said now she can sit in the same room with him.
My friend's father had Alzheimer's. Yelling all the time. His doctors prescribed phenobarbital. The screaming stopped. He was a much nicer person overall.
Medications help manage the symptoms. What works for one person, may not for the other person. If it comes to medications to ease symptoms, I'm all for it. My husband is on two, which could change and then we'll have to try something else. That is all we have now.
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