Are there any other caregivers of Frontotemporal Degeneration out there?? I would like to start a thread for support and education.
Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.
I could use that too. I’m very early along and just have a baseline of my frontotemporal lobes. Of course, I’m hoping that I just have small frontotemporal lobes! I think it’s called the “denial” phase.
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Is there a more appropriate place for me to be to discuss FTD diagnoses, either here or on (maybe) the FTD site?
Welcome to Connect, @wbuawxman.
This message has been moved to the Caregiver’s group because of the title that Limbolady gave it. However, I believe you are writing from the perspective of someone who has frontotemporal degeneration. I understand the denial phase. It is hard to accept.
Is this a recent diagnosis for you?
Yes it is … but very very tentative. I'm noticing increased isolation (and desire for it), lack of motivation, memory issues when wanting to initiate something ("I have to put away the _____", and then I immediately forget to do it. Word difficulties (finding the right one) are sporadic and nothing new, though they seem to have increased to some extent. I'm becoming increasingly unable to organize tasks and as of last week changed my employment status to part-time. In the meantime, to reduce the impact of the decrease in income, I've applied for partial disability from my company-sponsored disability insurance company, which has been a chore in itself :-(.
Had a recent PET scan to look for glucose metabolism abnormalities.
Slight asymmetric decreased metabolism in the temporal lobes, lesser extent parietal lobes as well as slight decreased frontal lobe metabolism. However, there is preserved metabolism in the precuneus and posterior cingulate gyrus. *Pattern abnormal though not typical of a specific nerve degenerative process*.
Brain volume: Brain volume is normal for age (ed. which seems to contradict findings from 2016).
Additional findings: No significant low dose CT findings.
IMPRESSION: Abnormal FDG uptake in the brain, however pattern is not characteristic of a particular neurodegenerative disease.
Just a thought as my husband had Fronto-temporal degeneration (FTD). Several of the symptoms you are describing sound a great deal like symptoms many experience in the early onset of FTD. You can look at information at the AFTD.org website.
Can we put this back under an appropriate topic …. or is it okay to keep this with the caregivers' questions?
Well, I got my results for the *second* second opinion, which basically made me sound like it's my depression (or hypochondria) and not a known neurodegenerative disorder. Same doctor did both of the second opinions, but first one was about 3 years ago, so I wanted to see what Best Doctors would think regarding a PET scan 3 years later.
Question …. is it possible for subjective cognitive impairment or mild cognitive impairment to be the result of some kind of functional thing, where there's no apparent damage but things don't seem to be working as they should (apathy, inability to organize at work, difficulty writing clearly and coherently, etc.)?
Hi @wbuawxman, as someone who is living with fronto-temporal degneration, I think you are looking for this discussion:
– Frontotemporal Dementia https://connect.mayoclinic.org/discussion/frontal-temporal-dementia/
You have posted there in the past and there are others who are looking to connect with people like you and to reduce the social isolation. Thanks.
I am a caregiver for my husband who has had his diagnosis for 5 years.
DonnaSue, if you're not already, I invite you to join the discussions in the Caregivers: Dementia group here: https://connect.mayoclinic.org/group/caregivers-dementia/
Your experience would be most welcome.
Hello. My husband recently got a diagnosis of Fronto-Temporal dementia, unspecified This is all uncharted waters for me. I would be happy to talk
Hi! I am anncgrl. My husband has been diagnosed with frontal lobe atrophy. It is one of many names for frontal lobe dementia. Our journey has been long, puzzling, heart-breaking and exhausting. I am part of another on- line group devoted to fld (frontal lobe dementia) It is al support group but am not sure of the name of site and there is an amazing organization devoted to research, support, etc. I will provide that info when I can get on my laptop. I also listen to articles on you tube about frontal lobe dementia. I have learned so much. Frontal lobe dementia is lot like Alzheimer’s. FLD manifests in many ways in people and changes on a dime. Many health professionals do not understand or know how to accurately diagnose FLD. My husband was diagnosed with Parkinson’s, water on the brain, and more. An MIR showed the accurate diagnosis. I am, the designated care giver, for my husband. In my county in North Carolina there is a program called CAPs. I get paid for 21 hours of caregiving a week and we have a home health nurse. The program is designed to help patients stay home rather be in a facility. Whew! This is enough for now. It makes me so sad. You are not alone. This is an awful condition with no cure. Patients die from related conditions, often pneumonia.
Hello. I so relate with your post. My husband recently was diagnosed with FTD. I am struggling on every level. We live in a very rural area so resources for caregivers are limited and involve traveling a distance. Finding support is going to be crucial for my survival! I would be glad to listen and share with others in similar situations.
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