Any other caregivers of Frontotemporal Degeneration out there?

Posted by LimboLady @limbolady, Aug 12, 2011

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 group.

@wbuawxman

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.
Findings:
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.

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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.

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@wbuawxman

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.
Findings:
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.

Jump to this post

Can we put this back under an appropriate topic …. or is it okay to keep this with the caregivers' questions?

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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.)?

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@wbuawxman

Can we put this back under an appropriate topic …. or is it okay to keep this with the caregivers' questions?

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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.

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I am a caregiver for my husband who has had his diagnosis for 5 years.

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@donnasuecarer

I am a caregiver for my husband who has had his diagnosis for 5 years.

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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.

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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

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@anncgrl

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.

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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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@snowbloom

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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I am going to get a contact point for you of people who are caregivers and then a site on facebook for people who caregive family with FTD. A great resource is also https://www.theaftd.org
.Do you have reliable internet access and where do you live? I will send further info shortly. You are not alone!

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@snowbloom

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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One possible resource is friends, relatives, and neighbors who say "Let me know if there is anything I can do to help." Usually they aren't only trying to be polite, they really would like to help if they could. BE READY WITH A REPLY! At your leisure, think of what they might be able to do. Could you come over once a week from 9am to noon to be a companion with my spouse while I can do grocery shopping or other errands? If I can count on that for example every Wednesday, I can schedule my medical, dental, and counseling appointments for that time. Or you might think of other things they could do like taking your spouse out for a hair cut. And maybe you don't need to wait for them to ask again if they've offered to help before; give them a call!

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