Symptoms/Behaviors/Type

GG06

Hi All,

Identifying my husband's type of FTD has been perplexing. He has behavior and language issues, but determining the dominant deficit is difficult. The neuropsychologist and his dementia specialist have diagnosed him with both behavioral and semantic FTD.

His MRI showed mild atrophy in the right anterior temporal lobe. His FDG PET scan showed moderate decreased activity in his right temporal and parietal lobes and mild hypometabolism in the left temporal and parietal lobes. From my research, it appears there is a right temporal variant of FTD that presents with behavioral and language deficits. The description fits my husband's symptoms/behaviors to a T. If this sounds familiar to anyone, PLEASE let me know! It seems to be rare. I have loads of research articles to share.

The crazy, and wonderful, thing about this disease is that HE is happier than I've ever seen him. The sertraline is a miracle drug for him, but I also think his anosognosia helps. He does not have the stress or anxiety that he had for as long as I've known him. He is like a happy 5-year-old. He loves playing catch (in the house) and talking about his "privates."

I'd say DH's most prevalent FTD behaviors are disinhibition, face blindness, anosognosia, hygiene, object and word knowledge loss. The thing that absolutely BLOWS MY MIND is that he is still working as a CPA! I told his boss about his diagnosis in July. He said that although he has noticed social issues, his written work and analysis are still excellent. I am so thankful, but it still is unbelievable to me.

Looking forward to learning about your LO's symptoms and behaviors!

Kelly

GothicGremlin

Hi there!

This is my first post in this group - looking forward to exchanging information with all of you. We're all in a rough place.

My younger sister Peggy is the one with FTD/early-onset Alzheimer's. Her FTD is Primary Progressive Aphasia (the logopenic variety, which I've been told is the rarest form of PPA). I think she may be more advanced than most other loved ones here. She was diagnosed in 2018 at age 59.

She has a lot of the later stage symptoms -

• Her language is severely impaired - very few complete sentences, made up words that aren't actually words, word salad - she's difficult to communicate with
• She gets agitated easily, doesn't like to be around "too many people" (too many people = more than 2 people), and gets frustrated easily
• She has Parkinson's-like symptoms - she can barely walk, and then only if she's got two people helping her (mostly we use a transport wheelchair these days), she trembles, and she's a fall risk, coordination is minimal
• She's between finger foods and hand-feeding right now. It could be any time now before finger foods are a thing of the past
• She's doubly incontinent, hasn't been able to dress herself for years now, can't take a shower on her own, really any of those personal care type things

On the plus side - she still knows who we all are!

Music is still a source of joy for her (she used to have her own band, where she was the lead singer). I've been converting all of her female vocalist vinyl into CDs for her. So much Madonna. She's also got a lot of Pat Benatar, Miami Sound Machine, Blondie, Cyndi Lauper, Berlin - so yeah, I've been transported back to the '80s. 😄 Hearing '80s music seems to make her genuinely happy, and it's great to see a real smile on her face.

CStrope

So glad music creates joy for her. My husband has refused music for most of his diagnosis, and only recently will let me put any music on in the house or car.

Jeanne C.

My husband has the behavioral variant. Diagnosed in January and progressing quickly. His memory/gerontology NP estimates him at 6c on the FAST scale (not a perfect tool for FTD, but it is what it is).

Symptoms/behaviors:

• Virtually no short-term memory
• Longterm memory is limited and random
• Disinhibition and inappropriate behavior, no filter/very blunt
• Severe anxiety with agitation and occasional crying
• Apathy/disinterest
• Near constant confusion and confabulations, occasional delusions
• Anosognosia
• Executive function issues- will not initiate activities, can't plan, can't follow directions with more than one step
• Inability to moderate food (will eat everything in front of him, even if full) with a strong preference for sweets
• Emerging issues with language: losing words, using the wrong words, and trouble comprehending words
• No orientation to time, little orientation to location
• Needs help with almost all ADLs
• Emerging balance issues
• Significant toileting help required and occasional incontinence (mostly bowel - has improved since I started a toileting schedule)

Some of his earlier behaviors have faded:

• Anger,semi-violent outbursts
• Hoarding (bc he can't really acquire new things)
• Sexual inappropriateness (I think the risperidone took care of that)
• Paranoia

He has moved from highly functional to highly dependent in just over a year. Hindsight is 20-20, and I now realize that he has been exhibiting symptoms for 5 years (possibly longer).

GG06

Jeanne, I'm glad you mentioned behaviors that have faded. This aspect of the disease makes sense, but still bewilders me at times. I'm sure the sertraline is a major factor, but Paul (I'm going to start using his name because it's just easier) is increasingly more pleasant to be around. He makes me laugh all the time. Life has actually improved in that everything is not a battle with him as it was for many years.

Paul has always enjoyed music, well mostly just James Taylor and Hall and Oates, but it's at a different level now. He likes it loud and wants everyone to hear it. We were in the car the other day at a stoplight. Paul rolls down his window and motions for the couple in the car next to us to do the same which they did. Paul turns the volume up and says, "Do you want to hear some James Taylor?" He dances everywhere - doctor's offices, stores, video calls, everywhere.

His eating habits have also changed dramatically. Before FTD he would eat a variety of foods and had a HUGE sweet tooth. He would have to have a treat every night. He was also a stress eater, so the treat would be a carton of ice cream, bag of hostess donuts, or 1/2 box of cookies. These days, he eats the same thing every morning for breakfast, lunch, and dinner. And NO sweets! I gave him a cookie a couple of months ago and he said it was too sweet! This is interesting to me because as you all know, FTD persons usually crave sweets.

I've noticed in the last couple of weeks Paul's memory is declining. He didn't remember his son's birthday last week. Last night I mentioned Christmas, he said, "When's that?"