[Songanddance]

Please -this is not the thread to bring up the situation with Anjae. 

RCR has given an explanation and she would most definitely not have made the decision lightly.  Please let it drop.

The situation is ultimately for RCR and Anjae to discuss.

[UrsaMajor]

Just for the record

 The prevalence world wide is uncertain with estimates of FTD amongst people ages 45 to 64 between 15 - 22 per 100,000 (Knopman, 2011) so 1 in 5000 worst case.

[Velika]

bvFTD is poorly understood, and likely grossly underestimated. My own sister is a scientist who researched it professionally. I have also talked to a researcher at a local hospital who echoed the same thing.

And so what if it is rare? Does this mean that it is impossible that someone could arrive here with this concern? And if so what a godsend it might be to learn about this disease here?

There is no way we are all dealing with the same thing. I can't imagine, after the nightmarish situation many of us have been through, while we would want to close any and all avenues of inquiry to someone who arrives here with serious concerns.

Do we all need to adhere to groupthink? Straw man arguments?

Please, if you happen across this thread and think your spouse may have bvFTD, or some other illness, do not let other people's stop you from looking into this.

If you are interested, here is an article on the topic, from the New York Times:
https://www.nytimes.com/2012/05/06/health/a-rare-form-of-dementia-tests-a-vow-of-for-better-for-worse.html

[Treasur]

Thank you for posting this very clear and interesting article, V, which I think shows that within a relatively short period of time the symptoms are quite different from what most LBS here are dealing with. Still heartbreaking and tremendously difficult, but evolving in a different way. Of course it may be the case that some people come here looking for answers and find that this is sadly what is the case in their situation. We likely encompass a broad church here on HS, even if bvftd is relatively rare, but a spectrum that includes MLC type 'breakdowns', character disorders, mental health issues and 'normal' exit affair limerence. In the end, all any of us can do is reach our own best judgement based on our individual situation and respond the best we can.

[Nas]

Thank you for posting this very clear and interesting article, V, which I think shows that within a relatively short period of time the symptoms are quite different from what most LBS here are dealing with. Still heartbreaking and tremendously difficult, but evolving in a different way.

This was the experience with my friend's dad. He died last spring in his late 50s.  Lived just about 15 years after diagnosis.  It was evident about 6 months after his odd behavior started that something was seriously wrong and he progressed very quickly to having to live in an assisted living facility.  The cognitive decline is not just poor decision making or impulsiveness.  It is an inability to care for oneself.  Although I am certainly no expert, and I also think there's a distinction between FTD and bvFTD.  I remember the thread well and I believe I commented at one point that I knew someone with the disease.

[Velika]

Please, if you are interested in this illness, or any other one, I implore you not just to rely on the anecdotes of people on the forum. (Where the subtext often seems to be, I have seen this, and MLC is not the same.) This is taken from the article. It makes a strong case that it is not always so clearcut.

Also, just to note, is this a forum with hundreds of thousands of members? Isn't what we are dealing with kind of rare?

From the article:

Patients generally receive from one to four misdiagnoses, and it may take years to finally get the right answer. Mistaken diagnoses can include Alzheimer’s disease, stroke, midlife crisis or psychiatric illnesses like depression, bipolar disorder, post-traumatic stress or anxiety. Many relatives of patients say doctors dismiss their reports of personality change. But it is real.

“They totally break down in their ability to connect with other people and care about them,” Dr. Miller said.

There are eight subtypes of frontotemporal degeneration, sorted by the symptoms they cause. Some affect behavior. Others, grouped under the heading primary progressive aphasia, affect language. Still others affect movement, leading to disorders that resemble Parkinson’s or Lou Gehrig’s disease (also called amyotrophic lateral sclerosis or A.L.S.).

But patients may match more than one category, and the subtype may change as the disease progresses.

“I see a lot who don’t present like the textbook,” said Dr. Edward Huey, an assistant professor of psychiatry and neurology at Columbia University Medical Center.

In most patients, MRI and other scans reveal shrinkage in the frontal and temporal lobes, sometimes to a shocking degree.

“If I showed you more extreme cases, you could read it from across the room,” Dr. Huey said.

He said researchers were using imaging to find out if specific symptoms could be mapped to atrophy in certain spots.

“The frontal lobes are sort of the last frontier in the brain,” Dr. Huey said, adding that the losses these patients suffer are helping researchers understand more about what the frontal lobes do. As the brain atrophy progresses, Dr. Huey said, patients “have pieces of psychiatric syndromes, but not the whole syndrome.”

[Nas]

Thank you for posting this very clear and interesting article, V, which I think shows that within a relatively short period of time the symptoms are quite different from what most LBS here are dealing with. Still heartbreaking and tremendously difficult, but evolving in a different way.

This was the experience with my friend's dad. He died last spring in his late 50s.  Lived just about 15 years after diagnosis.  It was evident about 6 months after his odd behavior started that something was seriously wrong and he progressed very quickly to having to live in an assisted living facility.  The cognitive decline is not just poor decision making or impulsiveness.  It is an inability to care for oneself.  Although I am certainly no expert, and I also think there's a distinction between FTD and bvFTD.  I remember the thread well and I believe I commented at one point that I knew someone with the disease.

DON'T THINK I COULD BE CLEARER THAT I'M SHARING AN EXPERIENCE I KNOW OF.
Jeez.  I posted in support of you and everyone else being able to share their thoughts without fear of scorn or punitive action.

Just because you are reading subtext into a post doesn't mean it's there.
You are pushing the idea of bvFTD as vehemently as you seem to feel people are dismissing the idea.
If it's okay for you to so strongly implore people to consider the possibility, it's also okay for people to share dissenting anecdotes.  Can't support one without the other in a free exchange of ideas. 

[Songanddance]

Reminder - this thread is about NPD/BPD and MLC not FTD.

[MyBrainIsBroken]

Please, if you are interested in this illness, or any other one, I implore you not just to rely on the anecdotes of people on the forum. (Where the subtext often seems to be, I have seen this, and MLC is not the same.)

When I read comments like the one quoted above I have to shake my head. Aren't the people who come to this site capable of reading the posts, including anecdotes like the one Nas posted, and deciding for ourselves whether bvFTD or BPD or NPD or bipolar are worth considering as an explanation for our personal situation? We aren't sheep. Just finding this forum indicates we have a reasonable level of intelligence and persistence.

We seem to use up an awfully lot of bandwidth trying to protect people who probably don't need protection. Protect people from members who post abusive comments? Absolutely! Protect people from members who post opposing opinions? Probably not necessary. Why don't we try assuming we are all capable of weighing the various comments and reaching our own conclusions?

Speaking for myself, I'm willing to read everyone's opinions and anecdotes and determine whether or not they apply to my situation. I appreciate all of the information that is being provided. Please don't protect me from other's opinions and anecdotes and please don't try to tell me what I should believe.

[marvin4242]

First I think there are many characteristics of MLC breakdown that overlap with BPD, NPD and other disorders. But there is a reason there are diagnostic criteria and we need professionals to decide: there is a lot of overlap in external behaviour in various mental health crises (and I believe MLC is a complex one). So it may look like any one of these disorders once it kicks in, but there are other diagnostic criteria (depending on what you want to look at) that REQUIRE events at an earlier time. So its easy to try to see these disorders in our loved ones.

And there may truly be NPD and BPD people who have MLC. But personality disorders are NOT subtle, they can be seen coming a mile away and rather quickly (at most in months). Most of us are pretty self aware and have spent years with our loved ones, we didn't simply paper over a personality disorder.

And btw there are also things like narcissistic traits or borderline traits and people may have them in differing degrees. This very well may be part of our MLCers make up, as they would be from bad coping mechanism from childhood/FOO issues, the same ones that ultimately leads to the breakdown we know. So it makes sense that we can look back and find these traits, specially when the idea is used to frame what we are looking for. Honestly some of these traits are in us all when we are under duress, so I am sure we can all find times we were showing some version of this. So someone could look back without context and say we have NPD?

I think we all need to feel in control of something that can not be controlled, it preceded us. So we look for explanations or diagnosis, because we need to know and feel there was rhyme or reason. It is much more unsettling to say "this happened before I met this person, and I didn't know, I had no control and this was going to happen no matter what."

Interesting question is what would any of us have chosen if we had known this at the start, what then? I have thought about this for my own reasons and decided I wouldn't have changed a thing.