Frontal Temporal Lobe dementia

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HeatherLst
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Frontal Temporal Lobe dementia

Post by HeatherLst »

One of my good friends, her grandmother died of frontal temporal lobe dementia. Her mother has one of the genes, but she is currently too scared to get the testing herself. She lives in fear of this disease and is constantly insisting there’s nothing she can do.

My question is, in all of the minds here, has anyone read new research like what we follow that might help her? Every time I post about new Alzheimer’s research into diet, exercise, etc, she comments how afraid she is but there’s nothing that can be done. Is this true, or can I point her in the direction of new research? Has anyone seen it mentioned at all?


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Dan Parkie 234
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Re: Frontal Temporal Lobe dementia

Post by Dan Parkie 234 »

I've learned that is important to respect and allow for emotional readiness. Your situation reminds me of a friend who said he was considering signing up for 23andMe genetic but felt reluctant because of concern about possibly discovering genetic risks for conditions that might be untreatable. After a couple months of hearing about and reading about ongoing research he surprised me by saying that he planned to go ahead with testing because he considered it a much different calculation in light of the possibility of treatment options.
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HeatherLst
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Re: Frontal Temporal Lobe dementia

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I definitely agree and I’ve not pushed anyone to get tested. But she walks around in fear. Whenever I post or comment on my own journey she gets super anxious and tells me how fearful she is. So if there’s any research into prevention, I’d like to share it with her. She’s not usually the type to be afraid—she’d see the information as weapon/tool she can use.


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Re: Frontal Temporal Lobe dementia

Post by TheBrain »

Heather,

Kate Swaffer is the blogger at Living Beyond Dementia. Ever since being diagnosed with frontal temporal lobe dementia several years ago, she has become an author and advocate of people with all forms of dementia. You might consider contacting her about her specific form of dementia and asking her your question; those of us on this forum are largely unfamiliar with this form of dementia. I understand Kate runs a Brain Health group, and based on what I’ve read so far, she seems to think that lifestyle interventions can help, though her symptoms are getting worse.

Recently, she posted about how she wasn’t too happy about the costs of working with MPI Cognition and a Bredesen-trained practitioner, so she isn’t going forward with that option. But that suggests to me she was at least considering that it would be worthwhile to do so. Here’s that post:

https://livingbeyonddementia.com/2018/0 ... ing-brain/
ApoE 4/4 - When I was in 7th grade, my fellow students in history class called me "The Brain" because I had such a memory for detail. I excelled at memorization and aced tests. This childhood memory helps me cope!
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HeatherLst
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Re: Frontal Temporal Lobe dementia

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TheBrain wrote:Heather,

Kate Swaffer is the blogger at Living Beyond Dementia. Ever since being diagnosed with frontal temporal lobe dementia several years ago, she has become an author and advocate of people with all forms of dementia. You might consider contacting her about her specific form of dementia and asking her your question; those of us on this forum are largely unfamiliar with this form of dementia. I understand Kate runs a Brain Health group, and based on what I’ve read so far, she seems to think that lifestyle interventions can help, though her symptoms are getting worse.

Recently, she posted about how she wasn’t too happy about the costs of working with MPI Cognition and a Bredesen-trained practitioner, so she isn’t going forward with that option. But that suggests to me she was at least considering that it would be worthwhile to do so. Here’s that post:

https://livingbeyonddementia.com/2018/0 ... ing-brain/

Thank you! I figured that in all the reading this group does on dementia and preventing it that if anyone would have run across it, it would be here. I’ll pass this on to them. Since posting this I’ve had another friend come forward telling me she has the exact same fear.


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Re: Frontal Temporal Lobe dementia

Post by NF52 »

Heather,
Below is a link to the University of Pennsylvania's FTD Center website, specifically a helpful page on "Predictive Genetics". Here's one sentence that I thought your friend might want to hear:

A child of a person with a dominant mutation has a 50% chance of inheriting the copy of the gene with the mutation and a 50% chance of inheriting the copy of the gene without the mutation.
https://ftd.med.upenn.edu/our-center/ni ... e-genetics

In other words, assuming her grandmother was correctly diagnosed with FTD (I saw an article that people with ApoE 4 were more likely to be incorrectly diagnosed with FTD than ApoE4 non-carriers) and assuming that her mother has reputable results that she does carry one of the few forms of genes linked to the autosomal dominant forms of FTD (meaning you only need one copy of the mutation from either parent to have the disease), your friend still has only a 50% chance of having that same mutation.

I know that Kentucky is a hike from Philadelphia, but Penn does offer genetic counselors who could meet with your friend(s) about the possible risk, especially considering family history. If her grandmother is the only one who had FTD, it may mean it was a "sporadic" mutation, not a familial type.
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