[bvFTD]

SongandDance:

You wrote that there were are about 3,000 cases of MLS on your MLS site. All right. But it seems to me that the views are repeats and the stories are by Of the sMe same people reporting updates.

Regardless, a neurologist who has been researching ftd for decades is certain there are well over a million people with the disorder in the US, most of whom are never diagnosed. Another researcher believes the alarming uptick in midlife divorces is due to this dementia.

[Not Applicable]

 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.

You are assuming everyone in this forum lives in the US. Where there would be insurance that would cover it and compassion from employers (or maybe not). It's basically a mental illness. Do you know the stigma and lack of support attached to that in some countries? Do you understand that in some countries it might actually be much better for the MLCer if people accept his/her own explanation for what is going on (however wrong that might be as well) than a false diagnosis of bvFTD?

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.

My husband is a doctor. He once took me to a colleague, a specialist, who actually examined me. This doctor told him, "I think Goner has (a specific type) of cancer." I was far far too young at the time for her to even remotely consider that as the first possibility because it was a kind of cancer that normally strikes someone much older. It was a ridiculous and irresponsible suggestion. My husband was angry, I was angry, he never took me to her again. I didn't have cancer obviously. If a doctor can get angry at a colleague for making a really bad suggestion after a patient exam, then doesn't it make sense that we as lay people would be angry that a total stranger who is not a doctor would diagnose all our spouses without even knowing anything about them?

he 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.

The reason to reject her idea is that the criteria for bvFTD don't match our spouses' symptoms. It's really that simple. There's something called differential diagnosis, you know.

[Ready2Transform]

Ready2Transform:

Velika is correct. She is giving you good advice. People diagnosed with ftd are fast-tracked for SSI. Why would you question her? As are people diagnosed with ALS.

Why? Because it's not based in any real experience! Like most of this thread. No offense Velika, I know you have read the info somewhere, but how many times have you applied for SSI? How things SHOULD work in this country (and yes, I'm talking USA) and how much red tape a person actually goes through are two different things. I know people who have attempted the process, and it's not so cut and dried in the real world.

For anyone who wants to do their own research, here are some links, so you can decide for yourself:

https://www.ssa.gov/disabilityresearch/fast-track.htm
https://www.ssa.gov/compassionateallowances/
https://www.ssa.gov/compassionateallowances/conditions.htm
https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022170

FTD is indeed on the Compassionate Allowances list, as is the requirements for proving it that would be necessary to even be considered. It all comes down to a judge's approval, and then afterward check-ins to make sure they still meet the criteria. The description brings home yet again how this is not what most of us are experiencing.

For Anjae: "The outcome for individuals with FTD is poor. The disease progresses steadily and often rapidly, ranging from less than 2 years in some individuals to more than 10 years in others. Eventually some individuals with FTD will need 24-hour care and monitoring at home or in an institutionalized care setting."

None of this is of any help to me, of course. My xH is bipolar and still works, building a life with his second wife. Oh well.

[bvFTD]

Chriss:

I am so sorry, but yes, your husband MAY have bvFTD. His complete disregard for you and the children, to the point where he didn't care if his family lived on the street is a glaring example of a complete lack of empathy, loss of emotions and sociopathy, which you have said is uncharacteristic. He has exhibited a drastic personality change in midlife.

My children forgave my husband once they knew he was sick. My one son stopped called his father The B*stard. It is better to know. Even if you can't get him diagnosed now that he is with the wh*re, you can at least tell your children there may not only be a possibility that their father is not in his right mind (which I am sure they've already deduced), but that he has a serious medical condition.

 You know best how to handle it, Chriss: You got them this far through the trauma.

 

[ChrissYAH]

so does that mean he will get progressively worse?? its unlikely he'll come out of this?

[Ready2Transform]

Chriss, absolutely no one here can predict what will happen with your husband. You have just had a huge BD with the wedding and that is more than enough on your plate without us strangers making it worse.

[Songanddance]

SongandDance:

You wrote that there were are about 3,000 cases of MLS on your MLS site. All right. But it seems to me that the views are repeats and the stories are by Of the sMe same people reporting updates

There are exactly 4128 members on this forum - 99% of whom came looking for guidance and advice and 99% of whom found that their stories were identical.  The views are not repeats - they are individual stories.  4128 INDIVIDUAL stories.

Regardless, a neurologist who has been researching ftd for decades is certain there are well over a million people with the disorder in the US, most of whom are never diagnosed. Another researcher believes the alarming uptick in midlife divorces is due to this dementia.

No-one on here is arguing with the fact that FTD exists and that it may be a hidden illness. NO one is disputing that.   If there is a ten year time frame then perhaps there will be a percentage of spouses on here who are sufferers. Yet again - NO-ONE is disputing that.

However you have not answered my question about my H and those who have reconnected, rebuilt or reconciled.  If they clearly show signs of "mental improvement" and have become better people but, if in your opinion, they do not have MLC depression then what did they have BVFTD?   

Velika - I am not attacking BvFTD for her opinions but I am asking that she consider how she welcomes new people to the forum.  Her phrasing and language is unsympathetic at a time when they are frightened, lonely and bewildered; think back to your first time on here. You sought some guidance, advice , reassurance. 

Is being told by a complete stranger that there is no such thing as MLC but  your husband has (not may have ) has a clinical degenerative disease helpful.  It's a bit like being told by a stranger " oh losing weight? - Yep - you've got cancer!"

How horrific is that? And I apologise profusely to all who may be offended by my comparison; I have had many family members who have had cancer and that was the first obvious symptom for them all.

I have no problem with bvFTD stating that it could be a cause of the spouse's behaviour but it should be balanced alongside the fact that there could be many other causes including MLC.

Chriss, absolutely no one here can predict what will happen with your husband. You have just had a huge BD with the wedding and that is more than enough on your plate without us strangers making it worse

Absolutely R2T. Chriss - focus on yourself - we have no way of knowing what the ultimate cause is but we do have enough experience and knowledge on how to look after yourself.
 
BVFTD - I am still intrigued as to how you think the LBSers who have vanishers or have ex spouse who are in other relationships/ married or otherwise can get their spouse to be tested.  What do those "LBSers" do? 

Please explain how you can insist to a very reticent spouse that they need to get tested.  Most of the "MLCers" would refuse or worse become very very difficult, perpetuating the problem.  It's all very well saying they need to get tested but what suggestions can you offer that would engage the spouse and make him want to be tested? 

If this is a site for helping people understand a whole host of conditions that may be present in the spouse then please help! Offer advice, guide rather than instruct. Please don't just diagnose without offering any back up on how to deal with the crisis when the LBS is at her emotional lowest. 

[ChrissYAH]

Chriss:

I am so sorry, but yes, your husband MAY have bvFTD. His complete disregard for you and the children, to the point where he didn't care if his family lived on the street is a glaring example of a complete lack of empathy, loss of emotions and sociopathy, which you have said is uncharacteristic. He has exhibited a drastic personality change in midlife.

My children forgave my husband once they knew he was sick. My one son stopped called his father The B*stard. It is better to know. Even if you can't get him diagnosed now that he is with the wh*re, you can at least tell your children there may not only be a possibility that their father is not in his right mind (which I am sure they've
already deduced), but that he has a serious medical condition.

 You know best how to handle it, Chriss: You got them this far through the trauma.

I think u may be right, this is not normal behaviour seems to me its much more than a MLC, my kids keep telling me he is insane, I haven't seen him in over 2 yrs last I saw him was at mediation in June, he looks 'sick' his eyes are sooo puffy something he never had prior to this also he had a smirk on his face, at other times he had his head turned to the side like he was ashamed of himself nevertheless not my problem anymore.

[Velika]

I think that what screening would do is attempt to rule out an assortment of possible causes for behavior and personality changes.

These might include: psychiatric problems, tumors, strokes, drug reactions, addiction, and yes — neurodegenerative disorder. This is why scans and other tests and screenings can help.

bv and S&D have highlighted a key challenge when faced with MLC, bvFTD, and many other psychiatric illness and personality disorder, and this is that the afflicted person does not think anything is wrong with them, or suspects but is fearful or ashamed. This is why being informed and having the right language to discuss our observations with specialists we seek help from (lawyers, judges, doctors, psychiatrists, therapists) — is extremely helpful.

As bv wrote, someone can receive a specific diagnosis and reject it or even treatment. Sadly this is also a key challenge with other syndromes and illnesses. Differential diagnosis is a huge challenge and it can take years just to get a diagnosis, with no guarantee that the afflicted person will accept it or treatment.

I think this is why it is important to be observant about your spouse or former spouse's behavior, as well as changes to appearance, behavior, and personality. These may eventually offer clues that your spouse's condition is improving or deteriorating.

I would like to note here that my FH began having severe headaches in the months preceding bomb drop, as well as a type of mystery feverish illness. These migraines have continued. He has as you describe CY, a changed appearance as well, especially around the eyes. A neurology specialist told me that sudden onset migraine is a huge red flag.

I really appreciate this discussion on HS!

[bvFTD]

You are exactly right about the screening, Velika. FH neurologist ordered FH to undergo blood testing in order to rule out curable forms of dementia and conditions that mimic dementia, followed by more extensive testing.

General practitioners, however, will often just give patients the MMSE which is a quick and accurate test for Alzheimers but not FTD. FTD patients can ace the MMSE even while they are living in care facilities and incapable of functioning well in other areas. I have read many accounts of people who took their spouses to the GP who declared the spouse fine even though the concerned husband or wife told the doctor that their spouse seems as if they have dementia, that is if the GP deigns to perform the MMSE at all since spouse can "mask" their behavior for a time and is young.

The clock-drawing test would be a better quick screening tool to use at the doctor's office since it tests sequencing and planning, executive functions that are compromised in ftd. As always, some of the most helpful tools are your accounts of their changed personality and family history.

I'm just throwing these ideas out in case anyone ever gets their spouse to a GP, but not a neurologist.

I would also like to add that I have repeatedly said in my posts that if YOU FEEL, after reading about ftd, that your spouse shows signs and symptoms of the disorder, that it is definitely something to think about. If YOU DON'T then carry on.