Are there 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.

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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Hello @limbolady I am Scott and it is nice to e-meet you here. My MIL had frontal temporal dementia and I was one of her secondary caregivers during those years. I was also the primary caregiver for my wife for 14 years during her war with brain cancer during which she exhibited many aspects of dementia. I also worked for the national Alzheimer’s Association for five years supporting their medical research.

I am always willing to share what I know if it can be of any help.

I send you peace, courage, and strength!

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Hello @wbuawxman, and @limbolady,

There’s no better knowledge than experience, so thank you @IndianaScott; I would also encourage you to look at the Caregivers group, and maybe post your discussion there; you can click here to view the Caregivers group: http://mayocl.in/2h1ttpY

Here is some news about breakthrough research conducted by Mayo Clinic, with regard to ALS or Lou Gehrig’s disease which is associated with various behavioral features and neuropathological symptoms as is frontotemporal dementia: http://bit.ly/1QVdTcd

In the meantime, I would like to tag @anncgrl, @steveg, @georgiefaris, @mandyjo, and hope they return with some more insight.

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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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Anncgrl here again: This is the support group I mentioned. This site has many support groups for a wide range of illnesses and offers support and resources for caregivers. Look for the group you need the most. Frontal lobe is listed in a grouping after the main groups. Also, I kept using FLD and it is actually FTD.

Online Support Groups for Caregivers | Caring.com
Get caregiving tips, advice, and support with Caring.com’s online support groups. Connect with those who understand what you’re going through. Share, vent …
https://www.caring.com/support-groups

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O.k. This is the site you want to save and use as a resource. I am giving serious thought to starting a support group in our area. There is a speaker on you tube who belongs to a support group and it is clear to me that it meant so much to him. http://www.theaftd.org/

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Hi @anncgrl,
Welcome to Connect and thank you for sharing resources that have helped you and your husband. Caring for someone with dementia can be so isolating and online support groups help ease the isolation. We shouldn’t have to do this on our own.

I look forward to your sharing things that you have learned from other support groups and your research online and through videos. You may also be interested in reading and connecting with others on this discussion on Connect.
– Caring for someone with dementia / Alzheimer’s http://mayocl.in/2ccA0jO

We also have a Parkinson’s group on Connect https://connect.mayoclinic.org/group/parkinsons-disease/

Thank you for telling us about North Carolina’s Community Alternatives Program (CAP). For anyone interested, here is more information http://bit.ly/2jayn67

Ann – how are things for you today?

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@wbuawxman

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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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?

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@colleenyoung

Hi @anncgrl,
Welcome to Connect and thank you for sharing resources that have helped you and your husband. Caring for someone with dementia can be so isolating and online support groups help ease the isolation. We shouldn’t have to do this on our own.

I look forward to your sharing things that you have learned from other support groups and your research online and through videos. You may also be interested in reading and connecting with others on this discussion on Connect.
– Caring for someone with dementia / Alzheimer’s http://mayocl.in/2ccA0jO

We also have a Parkinson’s group on Connect https://connect.mayoclinic.org/group/parkinsons-disease/

Thank you for telling us about North Carolina’s Community Alternatives Program (CAP). For anyone interested, here is more information http://bit.ly/2jayn67

Ann – how are things for you today?

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I am doing well, thank you. I took my husband for bloodwork today. He wanted to walk rather than use the wheelchair so we had a couple of interesting moments but he made it through that and breakfast at a local restaurant. He walks very slow, shuffles his feet and I steady him from time to time. Gait instability was one of the first things we noticed that eventually brought us to the diagnosis of FTD. It has been a long journey with misdiagnoses, hospitalizations, stays in nursing homes with rehab facilities to strength his legs and the frustrations of an ailment that seems to morph into other symptoms once we figure out how to work with the ones we have already. I told someone it is like playing a game of whack-a-mole. Still I much prefer having him home. I am fortunate that he is not acting out with anger or any other types of behavior that might not be manageable. When I finish this post I will be cleaning up the bathroom. He wears depends and has been using a man's urinal quite successfully lately but loose bowels are another challenge altogether. We have both come a long way in dealing with the logistics of showering afterwards, cleaning up messes, his embarassment, etc. I do not make a big deal out of it and he has learned that I do not think less of him. But I am several years into active caring at this point. I encourage anyone dealing with someone who has FTD to have patience with their loved one and with themselves. Every situation is different. Do not take things personally. This took me some time to learn but has made a huge difference. I am not a saint. I go off at times and we have to regroup and remember that we are in this together. 

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@wbuawxman

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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Yes it is recent …. last August/September through CAT scan and confirmation MRI. I’m still able to work full time; the diagnosis was based on smaller than normal frontotemporal lobes in my brain that came out of those procedures. Hence the uncertainty I’m expressing.

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@wbuawxman

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.

Jump to this post

Is there a more appropriate place for me to be to discuss FTD diagnoses, either here or on (maybe) the FTD site?

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@colleenyoung

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?

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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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@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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