How do they test for FTD?

[brooksea]

Can their be "mild" FTD?

My husband has always been WAY out there, so it's hard for me to determine if his behavior is FTD.

He has EL really bad! It sucks big time in public! And then, he doesn't remember the episode, sometimes!

 

[Bad Balance]

Can you tell us what the "FTD" abbreviation stands for?

Thank you.

 

[brooksea]

Frontal Temporal Dementia

Y'all correct me, if I'm wrong.

 

[trfogey]

Can you tell us what the "FTD" abbreviation stands for?

Frontotemporal dementia or degeneration.

Can their be "mild" FTD?

My husband has always been WAY out there, so it's hard for me to determine if his behavior is FTD.

He has EL really bad! It sucks big time in public! And then, he doesn't remember the episode, sometimes!

CJ, your best bet is to consult with the neuropsychologist/neuropsychiatrist who is affiliated with the Emory ALS clinic -- I think that's where you guys go, isn't it? There are some fairly distinctive behavior patterns in the early stages, or so I've been told.

 

[Phil's wife]

In our case, the MRIs have shown some atrophy in the brain and I have repeatedly talked to the doctors about my husband's behaviors. Finally I don't feel like I am imagining things and I have been told he likely does have FTD. It has been very frustrating because the doctor's did not take the time with it that I needed them to. One did a 2 question "test" and since my husband passed - after struggling - the doctor didn't feel there was enough dementia to diagnose -- until 3 months later.

The FTD forum has a really good list of symptoms for early, middle and late stages. Check those out.

Enjoy your break!
Stephanie

 

[Katie C]

I agree with what everyone has said... seeing a neuropsychiatrist would be huge. Even a neurologist who has an interest in FTD would be helpful.

Glen's brain scan (ordered by his pcp prior to diagnosis) was described as showing "some atrophy commenserate with aging" Wrong! So even if the right tests are ordered, they have to be analyzed by someone who knows what they're looking for! So... Dr Loemen-Hoerth looked at the results of that scan, then did some verbal tests... yes, there were only two but they were very telling. She asked him to list as many words starting with D as he could in one minute. He came up with 4. Then how many animals he could list in a minute... 3. And Dog was on both lists. Now... Glen's dementia was already fairly advanced.

As Stephanie said, the FTD forum has a good list of early symptoms. So does webMD. This is a link to the page from the UCSF site on FTD, specifically concerning your question about testing:

Neurological exam and history | Frontotemporal Dementia (FTD)

 

[Katie C]

CJ.. it seems like Al's swamped with moderator duty today... if you look back at your private messages there should be a link to a National Institute of Health booklet that gives symptoms and testing.

 

[Tom's Support]

May I ask, where are you going with this? I ask because I have suspected that Tom is also experiencing FTD, but not knowing where this will be leading, and knowing his reaction to depression I can just see what he would have to say if I were to start asking the doctors about FTD.
So far, he is just disagreeable, not much change there, but more critical, jealous, controlling, threatening, also with emotional liability in things like funerals, retirements, touching stories on the tv (too easy to tears when there have never ever been tears before. I have asked myself, so what? Does this need to be addressed? Then I ask myself, what if it gets worse, harder on us, or more obvious to the public?
What it boils down to for me is how much can my family handle, and what are our liabilities for his behavior? I feel callous, but too tired for much else.
Do you have the same concerns as me? Or do you think there is something out there that can help? Love to be in the know too if that is the case.

 

[trfogey]

Tom's Support,

Emotional lability and FTD are two completely different conditions. You would be well-served to learn the difference between them. There are medications that can help with either of them.

 

[brooksea]

Tom's Support,

My husband is "highly intelligent." However, his behavior is worrisome. Whether it be EL or FTD, I would like to know, so we can prepare and treat as best as possible.

We have a 10 year old and it's hard enough as it is. I would like to spare our son as much of this grief as possible!

Allen,

I think I will set an eval up for the next appointment. I would just like to know for sure!

 

[trfogey]

CJ,

I trust your instincts more than most people's careful reasoning. There's something there, even if it's nothing more than above average contrariness.

 

[Tom's Support]

OK, I was unaware of treatment for FTD and EL. Now there is a reason for pursuing the matter. CJ I totally get the problem with the public display and then the total lack of memory of the episode. It is difficult enough dealing with the incident, but then to be the only one in later conversations with the memory of it -- I tend to doubt myself and think that maybe I am the one that is going crazy. Stay strong. I have taken to journaling my days, especially the ones that are tough to deal with. In review when the pain is not so fresh I hope to gain insight to what really happened, and maybe learn something. Lots of sources say it is a good thing to do, so I am hopeful. Perhaps this might help you also, just for your own sanity? The journal may even help the doctors "believe you" that there is a real need for testing. I get the impression that they don't look very hard if symptoms don't jump out at them.
Say, what do you mean by "highly intelligent"? Do we have another Stephen Hawking in our midst?

 

[brooksea]

Say, what do you mean by "highly intelligent"? Do we have another Stephen Hawking in our midst?

More like an "absent minded professor" type.

 

[Phil's wife]

CJ, I questioned my husband's behavior for a long time. Very shortly before he began to show what we now know were ALS bulbar symptoms his personality changed drastically. Once he was diagnosed with ALS I read about FTD and went back and forth thinking he also had FTD. When we saw doctors, it was very hard for me to explain to them what I was seeing because most of it were things that only I could tell were "off" from his normal self and could easily be explained on a case by case basis by an outsider. And it was sometimes hard to talk about in front of Phil. Not until his FTD got worst could medical staff agree and say it may be FTD. It was very frustrating not knowing for sure and especially when it came to talking to him about treatment for his cancer and healthcare directives. Not knowing if he completely understood it was bothersome. For months we repeatedly went over and over what it meant to trache or not to trache. Each time he would come to a conclusion of not being ventilated and then the next time we were with a doctor in the hospital or ER they would ask him -- he would not remember and we would go through it all over again. I do have power of healthcare but doctors would talk to him for 2 minutes and assume he was 100% able to decide himself.

Aside from possible FTD - there is such a large percentage of cognitive decline in ALS patients - I am really surprised the ALS doctors don't address it more clearly with us.

CJ, have you had a chance to look at the FTD forum where it lists the symptoms of early stage FTD?

Stephanie

 

[Miss]

Stephanie,

As much as I love the #1 ALS doctor in Memphis, I don't think he is sensitive to the cognitive issues associated with ALS. We were fortunate in that the resident shadowing him when we first started going was a neurology resident from UT. He also works at the VA, so we have used him as our primary doctor. His grandfather had ALS, so he is very aware of all of the nuances of the disease. I feel certain we aren't dealing with full blown FTD, but clearly there has been some major cognitive impairment. It appears to be the same with most of the PALS in our area (based on caregiver meetings and what we are all dealing with). As always, you are in my thoughts.

Missy