[OldPilot]

PM:

I am so very sorry to report that this horrific disease is fatal. It can be drawn out out for over a decade, unless the motor variants (Amyotrophic Lateral Sclerosis, Progressive Supranuclear Palsy and Corticobasal Deneration) come to call.

People with the language variant of frontotemporal (Semantic and Primary Progressive Aphasia) seek out doctors because their brains are affected on the left side, but not our ill spouses whose brains are dMaged on the right.

Yes, my husband's neurologist would like him to undergo genetic testing, but my husband refused. He believes he is "fine" and that the doctor wants our money.

As I mentioned in an earlier post, I had a brief window when my husband said he thought he may be "fu**ked up in the head," so I was able to get him in. I also took him to Emergency a few months before because of his shocking behavior but he refused to go in. Other people tell their spouses they should see a doctor for allergies but clue the doctor in. And some people pretend they are sick and ask their spouses to accompany them. And as I have said, unfortunately sometimes the police force our hand.

The huge problem with this disease is that they appear to be okay even though they are terribly ill.

So for those of us that have been here over a decade - I guess we can rule out this disease!

[Velika]

I am not sure why people are upset if someone wants to say our spouses have or may have bvFTD or bvFTD phenotype. People are still writing incorrect things about bvFTD on this thread. It is not true that each person with bvFTD would end up in an obviously and progressively deteriorated state within a decade. (This post crossed with OP and there is a non-progressing version and some cases including phenotype that can progress over 20 years.)

I think that this may be a fruitful avenue for some people to investigate, especially if there is a family history. My former BIL for example had a meltdown in midlife but didn't have an affair; he yelled obscenities at a group of students. bvFTD makes the good point that if there is a diagnosis, the person can qualify for Medicare and also would not receive the same penalty as being fired. This can be a protective measure.

It is true that many MLCers do not think anything is wrong with them. This is also true for those with bvFTD. Maybe we can at least learn something from people working to better understand and treat bvFTD, who likely often deal with this same issue.

I found bvFTD to be a model of how we are supposed to approach MLC. She protected herself financially, shows compassion to her FH, has helped her teenage children forgive him, and has even made plans in the event that he should need support, even lacking the help of her FH family or even friendship or kindness of her FH. She is not angry, hating him, obsessed with his every move, and seems to have moved forward in way I think we would all want to.

I am not sure why people feel angry at the suggestion their spouse might have bvFTD. I wouldn't feel mad if someone told me my FH has a brain tumor. If you are worried this news means your spouse will never recover, we are all encouraged to live as if they won't come back. The only other reason I can think to reject the idea of bvFTD is the desire to raise awareness of MLC as its own unique syndrome. In that case, however, perhaps research into bvFTD can offer clues as to the cure to MLC and vice versa.

My dad also had a brain tumor. My mom has a seizure disorder. This doesn't mean I know or understand everything about all diagnosis of all conditions affecting the brain.

I want to reiterate that I called UCSF bvFTD department and was surprised that the response was receptive and validating. My own sister is now researching FTD. We can all learn from each other.

[kikki]

So for those of us that have been here over a decade - I guess we can rule out this disease!

Unfortunately not OP.  There is a lesser known variant called bvFTD phenocopy syndrome.
I am not sure that bvFTD was intially aware of this variant when she wrote of the 10 year time frame.

As with all things medical, there are differences of opinion and research as to whether it actually exists or whether it is a late onset psychiatric disorder instead.  No doubt, debate amongst the scientists/neuroscientists will continue.

[kikki]

So for those of us that have been here over a decade - I guess we can rule out this disease!

But it does mean that you could rule out the progressive version of bvFTD though

[xyzcf]

I shall repeat my concern Velika.

What worries me is the denial that MCL is something that is real.

What bothers me is emphatically stating that MLC IS a prefrontal lobe  disorder.

No one is disputing the many different potential causes in the sudden changes in behavior. I have seen many mlcers come through their crisis. Perhaps if bv had phrased her discussion differently there would not be so many people opposed to her information about FTD. As it is, FTD  is presented as the sole cause and MLC is discarded as something that does not exist.  That is my problem with this view.

[Ready2Transform]

bvFTD makes the good point that if there is a diagnosis, the person can qualify for Medicare and also would not receive the same penalty as being fired. This can be a protective measure.

I want to speak to this for a second, since it was a topic I actually heard in a non-MLC conversation today. Qualifying for SSI or Medicare is not so simple. Even in cut and dried cases, it can take several years before anything is instated that will help a family. In cases where a person may be saying there is nothing wrong with them and/or continuing to perform up to standard on the job, it would be even harder. My father had a co-worker friend who worked an assembly line job, was nearing retirement age, and had BOTH knees replaced - was still denied disability and had to keep working. My point being, don't get settled in the idea that it would be a piece of cake to get a diagnosis, then have the income you are accustomed to replaced by a subsidy. A diagnosis would likely be just as financially devastating as it would be emotionally.

Like xyz, I think the assertion that this is the *one* diagnosis that dismisses MLC as an umbrella is reaching and misleading. But more than that I think taking the focus off of ourselves and continuing to look for a way to *fix* what has likely already gone beyond our control by the time we are BD'ed prolongs the healing process. And I say this as someone who very much made that mistake myself and would like to see others get their lives and their families' lives back on track as quickly and healthily as possible.

[Velika]

I shall repeat my concern Velika.

What worries me is the denial that MCL is something that is real.

What bothers me is emphatically stating that MLC IS a prefrontal lobe  disorder.

No one is disputing the many different potential causes in the sudden changes in behavior. I have seen many mlcers come through their crisis. Perhaps if bv had phrased her discussion differently there would not be so many people opposed to her information about FTD. As it is, FTD  is presented as the sole cause and MLC is discarded as something that does not exist.  That is my problem with this view.

Okay yes she made this bold statement. But that does not negate everything bvFTD has to say or everything any one of us has to say. We can be partially correct. Overstating something does not mean there is no value to anything that person has to say.

I find there is a kind of vague truth to a lot of what I read about MLC. For example, I don't agree word for word of everything HB writes but I find some of her observations strike me as profoundly truthful at times. I am not sure that the Jungian conttasexual complex is explanation enough, but I learned a lot from reading this part of the HS site and this has helped me in a way to fit a certain piece of this together. In fact this is one reason I liked this site to start!

I think any experience like the one we have all faced invites us to take on the world with a little more opennness. We have a unique, albeit unwelcome in many ways, chance to experience what it means to be a conscious multidimensional being with ties to both the physical and spiritual world.

bvFTD I appreciate that you have posted here on this forum. I learned a lot from your posts and am grateful to you for helping me better understand what may have happened for so many generations in my FH family.

[Anjae]

I am not sure why people are upset if someone wants to say our spouses have or may have bvFTD or bvFTD phenotype

Maybe because some of us have relatives with degeneratives diseases and know exactly what it means, and don't like that such an heavy, painful thing is made equal to MLC, a reversible condition?

My former BIL for example had a meltdown in midlife but didn't have an affair; he yelled obscenities at a group of students.

So what? My cousin that had MLC didn't had an affair. He also screamed obscenities at his fellow students, at his partner, at his brother and to some friends. Once his crisis was over, my cousin went back to normal.

Do you know how many neurologic and psychiatric disorders involve having a meltdown and screaming obscenities? Several. Including Alzeimer's and Vascular Dementia. My paternal grandmother has the first, my mother the second.

I am not sure why people feel angry at the suggestion their spouse might have bvFTD. I wouldn't feel mad if someone told me my FH has a brain tumor.

I am glad you wouldn't mind someone telling you your husband has bvFTD or a brain tumour without any proof of such thing.

If you are worried this news means your spouse will never recover, we are all encouraged to live as if they won't come back.

There is a very big difference between being encouraged to live as if the MLCer is not coming back and telling people their spouse have a progressive degenerative disease. Again, it is incorrect, not to say wrong and unethical, to tell LBS their spouse have a degenerative disease when do not.

No worthy doctor or health professional would do that. Serious health professionals and scientists do not go around telling people their spouse has a degenerative disease just because some symptoms can be similar to that disease.

The only other reason I can think to reject the idea of bvFTD is the desire to raise awareness of MLC as its own unique syndrome.

Yes, there is a desire on HS - a site and forum for MLC, to raise awareness for MLC as a unique syndrome. Otherwise, this would be a site/board for other conditions and it is not. But that is the only reason you can think to reject the idea of bvFTD?

How do explain that MLC mimics bipolar? So, is it Bipolar, or is it bvFTD? Or its unique type of depression? Or a special sub-set of bipolar? Even if, bipolar is for live and MLC isn't. And the same is true of bvFTD, it is for life, MLC isn't.

How do you explain that MLCers go back to normal? That would not be possible with bvFTD or, for example, Bipolar.

In that case, however, perhaps research into bvFTD can offer clues as to the cure to MLC and vice versa.

The same could be said for research into Unipolar and Bipolar Depression as well as into endocrinology, the central and peripheral nervous system - namely the sympathetic and parasympathetic systems, the amygdala, etc. We have debated pretty much all those issues on the neuroscience threads.

And you Velika, always jump on the bandwagon of any new thing that comes along and always think MLC is that thing. You can never stick to a train of thought, you get all over the place, always thinking the new stuff that was mentioned must be it, it must be the anwswer, it really must explain MLC.

It is impossible to conduct any sort of serious study into a subject if one keeps thinking every new thing is it, and if one is always setting aside other previous, often far more simpler and close to home, explanations. 

We can rule out bvFTD, OP. As for bvFTD phenocopy syndrome, experts aren't even sure it does exist or what it is. But, to my knowledge, even in bvFTD phenocopy syndrome exists, people with it do not go back to normal - the illness may not progress, but it also does not regress. Once the crisis is over, MLCers go back to normal.

What bothers me is emphatically stating that MLC IS a prefrontal lobe  disorder.

I think MLC, like many other things, can impact the prefrontal lobe. But that is not the same as having a prefrontal lobe disorder.

MLC impacts many areas of the brain and body.

I think people here that are not familiar with our neuroscience threads should go read them to have an idea of the many things that have been discussed over the years.

The big problem with bvFTD is that she got here and said all our spouses are suffering from bvFTD. She didn't say some of them may have it, she said MLC is bvFTD. Big difference.

In what is bvFTD correct, aside from saying her husband as bvFTD (if he does, because, from what bvFTD writes he does not fullfill the 3 criteria necessary)? She claims, over and over again, all our spouses have bvFTD.

We know that is not true.

Ready2, we have often debated neuroscience issues, that may, or may not, be related to MLC. I don't think that is stop focussing on ourselves, I think that is learning and thinking about broader issues, not just MLC.

[Anjae]

I forgot, I think we can rule out any disorder/illness that is permanent/degenerative/which effects once gained do not dissapear, because, for most, MLC is temporary.

For the handfull that don't seem to come out of MLC, who knows what has caused them to remain in MLC.

[OldPilot]

Qualifying for SSI or Medicare is not so simple.
Even in cut and dried cases, it can take several years before anything is instated that will help a family.

Two years is a minimum.
Right now, as of today social security is hearing cases from 2014 in my area.
And you MUST have a diagnosis and doctors paperwork or your case will be denied.