Alzheimer's FTD article

[KatieNBoyd]

I am not sure where this goes so I am putting it here.

There was an article here in the Billings paper about FTD and alzheimer's. It clearly states that the FTD is fatal.

The link to the article
'It's OK to talk about it': Billings native learning to live with terminal dementia | Billings News | billingsgazette.com

It goes on to list three disorders ALS, Corticobasal syndrome, and Corticobasal syndrome that produce the changes.

So in following the Alzheimer's thread I am reading over and over that people have "died" from the FTD there is no mention of the ALS and such. It is almost like they would rather call the problem dementia.

I have found the articles to be interesting as they do include information on FTD that helps me understand my PALS and some of his behavior better. But it just seems weird to me

Here is also a link to the Association for Frontotemporal degeneration web site www . theaftd . org it provided me with some interesting information.

I would appreciate anyone else's take on these articles and their information and the connection with ALS

Thanks
Katie

 

[Nikki J]

It is certainly true that FTD happens without ALS and is fatal in and of itself. It even can happen in people with my genetic defect that they can get FTD and die without ever getting ALS though I think ALS and ALS/FTD are more common manifestations of c9.

FTD alone is very devastating. I have seen it twice in non family members, neither of whom had an identified genetic defect. They both died I know they suffered tremendously and knew something was terribly wrong even at the end stages. In some ways it was worse than ALS or ALS/FTD because their suffering was more prolonged and their dementia more advanced because they did not have the respiratory issues of ALS to take them more quickly

 

[affected]

Yes FTD is a fatal disease with no cure or treatment. Not everyone with FTD also has ALS. Not everyone with ALS has FTD.

As Nikki said though, people with FTD alone usually linger far longer and the suffering is awful.

You could say with ALS/FTD they have 2 fatal diseases, but that's pretty moot because it's not like doubly fatal, it's as fatal as either alone.

Thanks for sharing that article it gave a good description of how FTD affects the person's ability with language.

I noticed the changes because Chris had been such a multitasker, yep even though he was male! As a cafe owner he was always taking complex or at least multiple orders while cooking a range of meals, and holding conversations with people about any amazing subject they threw at him. I always used to say he could cook 10 meals at once and hold 3 separate conversations while doing so. (of course that's a slight exaggeration but not a huge one - lunch rush time it was amazing to watch him in his element!)

Very quickly it was hard to get him to take in a single concept and follow it through especially if there was a decision needed. Even if we did get something sorted by talking, he could not follow through on a daily basis and trying to talk it through again only made it worse as it would seem more complex to him each time.

He would accuse me of not telling him everything, but the fact was that he could not take in large amounts of information. So if I said that during this week we were going to something on a day and time and others were involved, he could not absorb and remember it all. It wasn't that he had a memory issue, it was cognitive - he couldn't sort and file more than one piece of information. So the day would come and he would be stunned at what was going to happen and accuse me of not telling him, though he would admit I had said something was happening.

It's so important not to become angry at your PALS when there are cognitive issues - it wasn't his fault. He could not make those brain pathways work any more than he could make his hands work. Adding in emotions like becoming angry or frustrated at them simply adds another layer that prevents them from comprehending anything.

 

[KatieNBoyd]

Thank you both Nikki and Tillie. I just became confused when reading the article some what.

Yes Tillie, Jon was the same as Chris very multi tasked and now I watch and see that too much given to him flusters him.

I do love his smile when he finds something funny or silly.

Katie

 

[vw-fl]

Hi Katie. Thanks for posting the article. My husband's twin sister was diagnosed with Primary Progressive Aphasia (PPA) 5 years ago.

vw-fl

 

[Lkaibel]

FTD definitely happens without ALS. I first learned about FTD when ten years back a woman I worked with had a 45 year old husband who developed it out of the blue. No known family history, no ALS or any other physical issue. It is a wretched enough situation, dementia in general that I am relived Brian's mind is intact if not his body. Our ALS doctor was VERY big on the cognitive testing for Brian because his dad had Althiemers. So far, 100% good on that count.

Another clarifying bit from our Doctor: he said that FTD is getting a lot of publicity in ALS patients, and the misleading statistic that "50% of patients have cognitive effects". Per our ALS specialist, YES 50% of ALS patients will experience some cognitive changes, some of which may well be caused by stress and depression. However, a much smaller number will have FTD, and it usually presents before, not after ALS symptoms. Interesting given all the publicity FTD is getting in the ALS community now.