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Are there any other caregivers of Frontotemporal Degeneration out there?

Posted by @limbolady in Caregivers, Aug 12, 2011

Are there any other caregivers of Frontotemporal Degeneration out there?? I would like to start a thread for support and education.


Posted by @wbuawxman, Sat, Jan 7 at 10:39am CST

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.


Posted by @colleenyoung, Mon, Jan 9 at 12:19pm CST

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?


Posted by @wbuawxman, Mon, Jan 9 at 6:45pm CST

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.


Posted by @wbuawxman, Mon, Jan 9 at 6:47pm CST

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


Posted by @IndianaScott, Sat, Jan 7 at 10:43am CST

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!


Posted by @kanaazpereira, Sat, Jan 7 at 2:19pm CST

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:

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:

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


Posted by @anncgrl, Sun, Jan 8 at 8:37pm CST

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.


Posted by @anncgrl, Sun, Jan 8 at 10:42pm CST

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 |
Get caregiving tips, advice, and support with's online support groups. Connect with those who understand what you're going through. Share, vent ...


Posted by @anncgrl, Sun, Jan 8 at 10:52pm CST

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.


Posted by @colleenyoung, Mon, Jan 9 at 12:17pm CST

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

We also have a Parkinson's group on Connect

Thank you for telling us about North Carolina's Community Alternatives Program (CAP). For anyone interested, here is more information

Ann - how are things for you today?


Posted by @anncgrl, Mon, Jan 9 at 4:40pm CST

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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