FTD

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scaredwifetx

Very helpful member
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Joined
Jul 25, 2015
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1,606
Reason
CALS
Diagnosis
07/2015
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US
State
tx
City
Dallas
Thanks for getting back to me everyone. Steve has been forgetting things, mixing up things and has been verbally aggressive the past week or two. He is normally so calm and patient. Some days he seems quite happy and some days he is quite impatient. I know we have been under a great deal of stress due to the never ending or done incorrectly remodel. It has made him upset since he would normally be the one to do any work in our house but I believe there is more to this.

We are in some kind of study and have to do phone interviews. I was asked several questions yesterday about changes proceeding two years prior to diagnosis. What I quickly realized is that he has changed and is no longer the same person. He has no need to get out of the house and as stated at top of this email gets very easily frustrated and has had short term memory issues as well as mixing up things that were said to him.

I guess my question is for anyone that knows about FTD. Are these symptoms? I am so sad watching him lose his abilities such as walking and hand usage that I do not know how I can take watching this terrible disease ruin his mind. I feel like I am trapped in a nightmare that just gets worse each day and I need for him to understand that we need to have some time away from all of this. Life seems to be ALS 24 hours a day for me and there isn't a strong enough prescription to make it tolerable. I try talking to him about his disease, things we should do and my feelings but his attention span and understanding of my feelings is not happening.

I know there may be stickies on FTD but I would love to just see what you all think and if this is just another loss we will have to take.

Thank you all for being there for me as sometimes I feel so alone in my thoughts and it really helps to share here.
 
Re: CALS Roll call

I try talking to him about his disease, things we should do and my feelings but his attention span and understanding of my feelings is not happening.

I know there may be stickies on FTD but I would love to just see what you all think and if this is just another loss we will have to take.

Thank you all for being there for me as sometimes I feel so alone in my thoughts and it really helps to share here.

Scaredwifetx, I so get what you are saying. My PALS doesn't get angry a lot, but very insistent on having his way the moment he wants it. (And he's pretty much been getting it. :)) The few times he hasn't, it's been more of a 3-yr-old's temper tantrum than anything threatening. But it is very lonely to be watching our companions slip away from us like this. It's hard to say more on a public forum, but just know my heart is with you. Others with more experience will share their wisdom, I'm sure. Wish I had some of that, too, but I'm just feeling lost with it all and tears constantly ready to spill. Sending a hug.
 
Re: FTD?

Everything you are saying could well describe my mom as well. Her ALS Neuro says she most definitely is typical FTD. In many ways it is tough to have this condition on top of the ALS. In my mom's case the upside for her is she is without fear for the future or what the disease brings. For me as her caregiver it means many of the decisions related to her care are made by me, while honoring the goals she laid out earlier in the disease. The absence of empathy and emotion is the toughest. The ability to reason is absent.

Tillie has seen the course of this side of ALS through its whole course. I know she has great insight.
 
Re: FTD?

I'm going to do a detailed reply to this later on as I have to get some things done.

Certainly FTD makes the whole deal of ALS into an absolute nightmare, and you are describing many hallmarks :(
 
Thank you all. What you are saying is happening to us. My heart breaks for you both. Steve could never be abusive in any form to me but he is changing and its so depressing. I don't have any clue how to deal with these changes. I feel like the weight of the world is on my shoulders with taking care of mom, Steve, working full time and trying to hold it all together. I hate that Life has come down to being trapped in a house and not
enjoying the last bit of time we have together but reasoning with him is not happening.

His brother is going to be staying with us and hopefully he can help us make it through this.

I hate this disease and it is so heartbreaking that it affects so many remarkable people. Holding it together when your PALS is having so many mood changes and does not care or want to know of the changes that are happening or going to happen. Just to think that this just gets worse is terrifying. I so admire those of you that have made it through and are here today helping others. Tillie, You are the Queen of Hearts.

I wish I could see all of you, give and get big hugs. I can't understand how the pain and suffering we all share can suit any purpose and I am having a issue with faith right now. This is beyond cruel and changes us forever. Why?
 
My heart is breaking for you. Certainly the cognative decline and personality changes have to be the cruelest cuts of all. Our Queen of Hearts knows this all too well, and she is very generous with her experience. Please never feel alone; none of us travel exactly the same path, but we understand each other in ways that people not dealing the ALS can. Share--that's what we're here for.

Becky
Queen of Everything (Tillie says I have to keep the title :)
 
My steve also has similar issues. The psychiatrist we see says cognitive changes are a given for more than 50% of pals. My steve isnt aggressive other than he argues about everything. Hugs yo you. Steph, Queen of Scheduling
 
I still feel incredible sorrow that I am known as the one who knows FTD so well. I couldn't wish harder that this part of the disease had not been ours.

Firstly though let me say - recognising that what was happening was FTD and not Chris was the key to my survival of what went on, and the key to me being able to simply love him no matter what the monster did to him.

The most recent studies do indicate that 50% of PALS suffer some kind of cognitive changes.
Cognitive changes are only a part of FTD, so it isn't that 50% of PALS have FTD.

There is a type of FTD called the behavioural variant.

If any PALS are reading this, please understand that all PALS will feel varying levels of anger, frustration, embarrassment, fear, depression, denial and even stubbornness. Showing emotions and feeling these kinds of things is normal and does not mean there is anything happening in the brain.

When FTD happens what the CALS will notice (the PALS rarely are aware there has been any change in their personality or behaviour) is that PATTERNS of behaviour develop and the entire personality of the person changes. This is very different to having an angry outburst, or trying to deny what is happening.

A big thing reported with the behavioural issues is that they will never, or almost never acknowledge any behaviour, and will not apologise even if they know they have been very hurtful.

For me this was a really big one. Chris was not perfect before ALS and he was a man who would get really cranky about something, have a little fit, then laugh and apologise if he had been a bit too 'kick the chair'.

He developed personality changes well before bulbar symptoms, but I had no idea of course that anything was going on and thought he seemed to be becoming a little depressed.

This very first personality change for him showed in this way. He loved working in his cafe, he loved people, talking, food and talking. He would come home every day talking a mile-a-minute about all the funny things that happened with customers (and lots of strange and funny stuff happens in the course of a day in a cafe!). Then he would be out on the property doing stuff or looking around, he was a very energetic person.

A change happened in him and I noticed he began to complain about the stupidity of people and would be really tired and just want to whine about every little thing and sit about.
Not anything to really get too worried about, but when I mentioned he seemed down, and was anything wrong, and that he seemed to come home complaining he became very angry and started accusing me of only wanting him to be happy and jolly no matter what he felt.

Looking back it was the beginning of the personality changes - paranoia towards me, apathy towards everything, agitation, lethargy and frustration - all hallmarks of FTD.

As things worsened and I watched him make terribly poor choices and withdraw from everyone and lose touch with all reality I found this so much harder than what was happening to him physically because it put a huge wedge between us as a couple.

But, as I learned what was happening, I learned how to deal with it. It was not easy, it was heart breaking, and I lost him a long time before he died.

Here are a couple of links for you to read a little more about FTD.

http://alsn.mda.org/article/when-thinking-parts-brain-go-awry-als

http://memory.ucsf.edu/ftd/overview/ftd/symptoms/multiple

We will help you survive this if it turns out you are dealing with FTD on top of ALS.

I'm so sorry, it seems like ALS was the worst thing one could imagine, but FTD on top just takes it all to a level that is beyond my grasp even though I lived through it.

- - - - - - - - - - -
Tillie
Queen of Hearts
 
Good girl Becky - should I make you a text crown too? :lol:
 
Thanks so much Tille and the information you posted is so very helpful. A lot of the signs are there with Steve. I am so sorry you had to go through all of this but your incredible kindness is so important here and your sharing those dark moments is so appreciated. You should have many crowns as you truly are the Queen of Hearts.
 
There is a lot of good solid information online about FTD that is really helpful to read. When you find yourself nodding and saying - yes that's what's going on, it does lift a good part of the load.
 
"The paranoia towards me, apathy towards everything, agitation, lethargy and frustration" is all terribly confusing when it is happening, but as Tillie says, once you understand what is going on it definitely lifts part of the load. I still don't know if my PALS has full blown FTD or whether it should just be put down to cognitive changes connected to ALS, but whatever it is I have grown to accept the way he is. I have had to. Does it still hurt? Yes. It breaks my heart every day. I have got used to his refusal to leave the house - he won't even sit on the verandah - and his choice to withdraw from family life and spend the remainder of his life in one room. That was hard, but the lack of empathy and emotion are the worst. I choose to draw on my faith (which I battled with and completely lost at one point) and everything I have within me to show my PALS how much I love him every day despite his behaviour. Tillie and the other past CALS taught me that I need to embrace each and every moment my PALS is still with me, so that is what I try to do. I am so sorry you are going through this and wish that we all lived closer so that we could get together to cry, rant, laugh and hug the pain away.
 
Thank you for your kind words and I am so sorry that you are going through this part of it. I can't even imagine gonig through all of these things but hopefully they will come on slowly. THe past couple of weeks i have noticed a lot of changes but physically and mentally. So, it looks like we are now on the roller coaster ride of this disease.
 
I still don't know if my PALS has full blown FTD or whether it should just be put down to cognitive changes connected to ALS

Poppies what you describe is FTD.

Cognition is the mental process of acquiring knowledge, problem solving, decision making, comprehension.

This is the area where up to 50% of PALS will have changes.

Behavioural variant FTD has the hallmarks of paranoia, apathy, withdrawal, lethargy, anger and rage, obsessive behaviours. You add that to the cognitive issues above which they are also experiencing.

Still two people with FTD are going to be quite different just like any two PALS, and it depends on how much wastage has happened in the frontal lobe as to how severe the behaviours will become.

My Chris moved into the language variant in his last couple of months.

That stuff I just wrote sounds terribly clinical when I read it back again! Poppies just described the real life heart break of watching this behaviour, and living with it inside your own home that was once filled with so much vitality, laughter and love.
 
How do you all cope with the changes in personality? my dad has been diagnosed with ALS for a little over 6 years now. the last 2 years his personality has changed. I believe now that this is due to FTD, however, he has refused to go to a doctor (of any kind) in over 5 years so I cant be certain. My mother and I are his only care takers and his emotional abuse is wearing us down. We know that most of how he is acting is due to the disease (and I'm sure some of it depression as well) however, it doesn't make what he says or the way he acts any less hurtful or irritating (at times). The worst part of all this as the caretaker and family member is that this is how I will remember him. any advice would be great!
 
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