Als/ftd

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soonerwife

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I have read that 40-60% have some sort of cognitive decline.

I agree that some of these things can be age related.

I myself find my self looking up the spelling of words, and rereading paragraphs. I find my mind wandering and lose my train of thought quite easily. I also find myself having a hard time finding the correct word a lot these days. I think I just called myself old, lol!

I also agree that you recognizing and wondering is in your favor.

I appreciate everyone sharing.
 

affected

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You also have to add stress into the equation.

Cognitive difficulties when under high stress, and when not getting enough sleep etc is also well documented.

FTD is about patterns of behaviour as well as it will involve cognitive changes.

I think all CALS know they function and even behave differently under the strain. So these are truly complex causes and influences.

With true actual full on FTD I would like to note that it nearly always starts either before or around the same time as the ALS. When cognitive decline is noticed later in the ALS progression it seems more related to breathing, stress and while certainly some brain changes, not actually a dementia. As I said previously, FTD is a terminal disease in it's own right, rather than a change at the end of ALS progression. I don't know if that is truly a comfort, but there truly is a difference between some cognitive issues and someone who turns into a completely different person.

What an important conversation this is - thank you to everyone that are contributing with such deep honesty!
 

Clearwater AL

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Sooner, you wrote...

"I myself find my self looking up the spelling of words, and rereading paragraphs. I find my mind wandering and lose my train of thought quite easily. I also find myself having a hard time finding the correct word a lot these days. I think I just called myself old, lol"

My problems have developed rather recently in my life... over a few months.

For you it could be the stress you're going through as a Caregiver. Tillie just wrote a good insight to stress.
 
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bigmark1954

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I am 63 and know that some of my issues are related to that, but I am paranoid cuz FTD is in the back of my mind all to often.

Perhaps we should talk about memory in regards to FTD. I wish my long term memory wasn't so acute. I am reliving things from as far back as 5-6 years of age, and agonizing over the bad stuff and wishing I would have reacted differently. It is amazing to me that my long term memory is so accurate, right down to names and places.

Short term memory is not as good as pre ALS>
 

affected

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Hey Mark,

short term memory is often a part of ageing.

Memory losses with FTD are not the usual, especially in the earlier stages, but it can happen. It's normally more issues around behaviour, language and executive functioning.

However, what I found with Chris was that his executive functions deteriorated quite quickly and the fact he could not absorb complex information made it seem like he was having memory issues. It wasn't really - he didn't absorb and process information well (this is what executive functioning is).

Everyone is so different, and you have to compare against how the person was before. So I can only compare Chris to Chris, not to someone else if that makes sense.

So before FTD he ran his own cafe. He had a list of a hundred things in his head all the time and he was doing so many things at once - yes a man that truly could multitask! :lol:

He could be cooking 10 different meals and be carrying on at least 2 conversations at the same time. He held long shopping lists in his head and even knew how much money that would add up to cost.

After FTD saying - "we see the doctor on Monday" would be remembered. But saying - "on Monday we will see Dr X and get this checked and scripts and then we should think about some new shirts and maybe we can do a nice different way of driving home." He would not absorb this and would not remember the important bit - Dr on Monday. This was hard to adjust to as we would once have sat and discussed all the bits to do with an outing.

So as a result he would appear totally shocked on a given morning to find out I was getting him ready for something in particular even though I had told him about it, probably more than once. Of course he would accuse me of always leaving it til the last minute to tell him things because I did not want him to know what was going on.

So I had to try to keep information brief enough for him to absorb, without being so brief that he felt like an idiot (he was by no means an idiot no matter how much FTD he had). I would try to tell things several times to help them be absorbed too. eg On Monday night say - Next Monday we are going to your GP for regular scripts and checkup. Then repeat that around Friday, and then again say it Sunday night.

Actually exhausting for the CALS - I had enough trouble remembering and coordinating everything even with an electronic calendar, but had to remember to keep telling Chris in advance.

If I did not, he would become furious and that always made things nearly impossible.

If you found that too difficult to read and absorb, I probably just did a terrible job of explaining it all! :lol:
 

Lscott71

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My husband started with FTD, just had no idea what it was. That was the beginning of 2016. He started repeating things over and over and was having dizzy spells. Went to the doctor and had MRI because I was afraid he’d had a stroke. That was all clear, so doc thought he had mental health issues.

Couple months later he started getting super paranoid about things like driving a certain way to work because of a billboard on the freeway. He thought there were devils on that road and he refused to drive that way.

Finally noticed him not comprehending and processing information. He just couldn’t understand what people were telling him. A customer at work thought he was on drugs.

He was finally diagnosed in May when the physical ALS symptoms became noticeable.
 

soonerwife

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Sorry to hear about your husband's FTD. It definitely makes things so much harder...
 

affected

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Lscott71 I'm sorry about the double whammy - as you note it is nearly always the case that FTD begins before or with the ALS symptoms.

I hope you find lots of help here in dealing with both sides of the monster.
 
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