any advise when it is not FLD?

my sister is showing alot of personality and behaivor changes. but the CT scan was negative. now what? she has chased all but me and her husband out of her life. and we are barely coping. her daytime caregiver just quit this week. she just could take the poor treatment anymore. just dont know what to do. we're out of money and out of support and out of options. we're hoping for hospice, so her husband doesn't loose his job. but that 6 months to live rule has us scared. has anyone else had irrational behaivor without it being FLD?

The 6 month rule usually is not a concern. Many PALS have been on hospice for over a yr or more. It just means they will reevaluate every few months. Just be sure u have all equipment before u go on hospice

Your sister may have Emotional Lability (uncontrollable laughing, crying or anger) that can be helped with a new drug called Neudexta.

I was not aware that a CT scan is a tool that can provide a definitive diagnosis of FTD without concurrent testing (I could be wrong). Whether it be FTD or EL or something else, it sounds like she really needs some sort of anti-depressant.

I hope you will keep us updated. Good luck to y'all.

Glen's brain scan was read as "some atrophy commensurate with aging".... aka.... basically clear. He DID have FTD but the diagnosis is frequently missed. Your sister needs to be assessed by a neurologist or neuropsychiatrist familiar with FTD.

My mom's brain scan did not show any changes that were indicative of FTD. She did, in fact, have it. Imaging the brain is only one test that helps in the d x of FTD. A big part of the evaluation, starts with observations made by the family. Was your sister evaluated by a neurologist that specializes in dementia? Were you and your BIL asked a lot of questions?

In the meantime, be persistent. Strongly suggest that something be prescribed to help with the behavior's she's exhibiting. I think in a lot of cases, family members are the one's who have to push for the answer. Learn more about FTD. Make a list of ALL behavior changes/symptoms, and get to a Dr. that's qualified to do a full, and proper evaluation.

Even with meds, the situation will not perfect. However, a diagnosis can make a BIG difference in how others react. When people know that there is a disease causing the behavior, they seem to deal with the situation as a whole much better. I know it's difficult to persevere, but keep on going and try not to lose hope. Working with the hospice team will go much smoother, if your sister does in fact have a d x of FTD, and they are aware of it. Best of luck to you.

Laura

thanks everyone! the team meets tomorrow to discuss their findings since she was admitted to nuero on thursday. she is still insiting on facebook that there is nothing wrong with her and that her husband is doing this to her to punish her for things that happened years ago in their marraige. and also so he can play volleyball and go golfing.
is it best to confront her with the truth, or to continue to sit and listen to this? i dont know....

she doesnt do the laughing, crying thing. what she does is twist things that have happened into them being abusive toward her or twist situations into them not being her fault whatsoever. i never really call her out on any of her lies. i just sit and listen. and even if i have talked to the people involved, i try to stay non-confrontational. i mostly do this so she will not push me away, so i can continue to be supprtive to her and her husband.

everything i have read about ftd diagnosis. seems to have a ct scan that proves it, or no ct scan but it is pressumed. i havent read anything where there is a negative ct and the diagnosis is still ftd. any links on this would be soooo helpful!

thanks again!

nanette

the palliative care decided. she did not meet hospice requirements and they are sending her home tomorrow. she's happy. we are all devastated. no meds, no diagnosis, no help.

Getting an FTD diagnosis can be very hard.. you need to keep at it. The behavior you are describing very much indicates FTD. I know this will go to moderation but once it clears, PLEASE check the website theaftd.org They should be able to answer some questions and help you find help getting a diagnosis. Don't give up.. help is out there!

My understanding was that the MRI is the test needed to establish atrophy of the frontal lobe (causing FTD).

A pet scan and/or MRI is usually used to diagnose FTD. Jim's CT was also negative except for age related changes (though what changes are in a 35 yr old I don't know!)

Recent studies have shown that as many as 50% of PALS have some sort of impairment in the brain. O will post the link when I can find it. I believe Al's D oct or did some of the research. My husband definately has the symptoms you mentioned twisting things to put blame on things that are not factual. He will say something that is very cruel and when I say he said it a few minutes later he says I am lying just like I always do. I am akways putting words in his mouth that he never said. He also is paranoid and accuses me of having affairs and giving him the wrong pills or poisoning him. Bit when I Tell him he has accused me of these things, he deny's he ever said that.

thank you all so much! we're fighting! the support means sooo much!

My heart goes out to you. I couldn't even get the doctors to do the testing on Tom. He had "classic symptoms" as described by the nurse that runs our ALS support group, but I couldn't get anyone at Sunnybrook interested in investigating for me because Tom was insistent that nothing was wrong. His behaviour put such a rift in our family that it destroyed the love between him and his children. In the end this made his passing easier on everyone because of the relief. No more bad treatment.
All we did to cope was get "time outs" by spelling each other off and taking days where we didn't come home.
It wasn't easy, but we did come out the other side.
I am sorry if my words hold only weak hope, but do be strong, and get friends/family to hold you up when you need it.

Nanette - FTD can take many forms. Being mean is one of them unfortunately. She needs neuropsych testing with a psychiatrist that performs evaluations on ALS patients. But do you really need testing to understand her behavior is out of control. NO. Talk to the neuro privately and describe to them some of the scenarios that have HAPPENED. And the key term is privately. Email is good too. But start relaying the information back to them so they can start documenting the progression. Unfortunately, the FTD can mean accelerated progression of the disease. It is a difficult path and I know the words are hurtful - even though they are caused by the disease.

Also being angry can also be a form of grieving. Try not talking back when she is on a rant. And when she says something like - OH - SO YOU'RE NOT TALKING TO ME NOW? Say no - not until you calm down. If she keeps talking - remind her to calm down. And maybe at some point you can gently discuss the prognosis and her fears. Anger is fear driven - remember. And she is undoubtedly afraid of the future. We will keep you in our thoughts. Try to be strong. I know its hard...<3
Amy

Unfortunately the words 'Calm Down' have always been what my husband calls fighting words. He said this before his ALS and it is Two words that has always set him off