Old 10-12-2017, 11:45 AM #1 (permalink)
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Default Als/ftd

https://ftd.med.upenn.edu/about-ftd-...-sclerosis-als

After reading this, there is no doubt in my mind that my husband has FTD along with ALS.

So heartbreaking!
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Old 10-12-2017, 11:58 AM #2 (permalink)
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Default Re: Als/ftd

I am so sorry to hear that.
For my husband, the "complex rituals" part applies and did as long as I have known him so would not be a symptom but I do watch for this- his dad had dementia.

Big hugs, no words for any of this horror show.
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Old 10-12-2017, 12:59 PM #3 (permalink)
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Default Re: Als/ftd

Thanks for the good read. This would be enlightening to those that know very little about MND, and a good barometer for those of us who are concerned about FTD.
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Old 10-12-2017, 03:10 PM #4 (permalink)
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Default Re: Als/ftd

Sooner it's such a double whammy, losing the person as well as their physical changes.

I'm guessing you have read my information about FTD. You can find it by clicking on my name beside a post and choosing to go to my homepage. It may help with some far more detailed information.
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Old 10-13-2017, 08:58 PM #5 (permalink)
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Default Re: Als/ftd

Thanks for your Homepage and the writing on FTD.
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Old 10-14-2017, 08:54 AM #6 (permalink)
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Default Re: Als/ftd

The hardest part for me about FTD is the hurt it causes the family.

I am still trying so hard to figure out how not to be hurt by his actions!? How not to let it cause resentment!? How not to allow it to tear apart what was the most beautiful marriage I could have ever imagined!?

I keep telling myself that it's isn't him doing these things, it is this damn disease.

I still find myself crying myself to sleep at night over the things that I am seeing.
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Old 10-14-2017, 04:08 PM #7 (permalink)
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Default Re: Als/ftd

hugs sooner, I know, believe me I know.

I suffered so many flashbacks for so long after Chris passed - centred on the look in his eye and the accusations.

All I can say is that I constantly forced myself to step back and repeat over and over that this was not the behaviour and attitude of the man I knew. I would picture in my mind his brain wasting away like his muscles - I would deliberately look at parts of his body that were wasting and remind myself that the behaviour I was witnessing was as real as these wasting muscles - that is, there was so little of the person he was left and just this stringy nasty bit of stuff that jerked about and couldn't function anymore.

That visualisation could really help on bad days.

But it did hurt, I was walking wounded. I'm so sorry you are going through it.

They cannot comprehend the impact, it's not that they are stubborn or don't want to, that part of the brain is being wasted away.
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Old 10-14-2017, 09:10 PM #8 (permalink)
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Default Re: Als/ftd

I completely agree Tillie. I know in my head that he can't help it and that his brain is damaged but it still hurts my heart.

I am going to try to not let myself get so hurt by it.

I will keep telling myself over and over.... it's not him, it's the disease, it's not him it's the disease.

He would have NEVER done these things before ALS and FTD. I have no doubt about that.

Honestly right now I feel like I hate FTD more than I hate ALS...
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Old 10-14-2017, 10:13 PM #9 (permalink)
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Default Re: Als/ftd

Tillie, in the early stages can the person recognize some of the symptoms coming on?

As it began was Chris aware (I'm trying to find the words)... mention himself he was noticing some of the small symptoms noted in that article on FTD?

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Old 10-15-2017, 04:46 AM #10 (permalink)
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Default Re: Als/ftd

Sooner I get it - I can't even begin to describe my hate of FTD

Al, no is the short answer, but of course there is a longer answer.

Chris exhibited behavioural changes. At first they were so mild it was more like after some months I began to realise he was changing. If I raised anything he would become angry and defensive (quite unlike him in itself). Now since paranoia was one of his prominent symptoms, I'm afraid that discussions on this were not possible because he was paranoid about me.

Actual cognitive changes did not start for many months after this and the language changes did not start until his last couple of months.

The total lack of insight is a bit part of behavioural variant FTD.

Many PALS notice they have changes in their cognitive ability. This is really common, and is different to actual behavioural variant FTD. PALS tend to become aware that they are having some cognitive issues, but usually their CALS and close friends or family notice a lot more of it.
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Old 10-15-2017, 09:43 AM #11 (permalink)
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Default Re: Als/ftd

Luckily for me, I haven't noticed paranoia or defensiveness.

Early on, I noticed executive function was being affected.

Then Lack of empathy

Then Apathy or inertia

Then Complex rituals or fixations

Then Lack of insight

But it took Disinhibition to make me realize what was going on... I guess I am a slow learner, lol!

This all started 2 years ago or even before that. The signs were just so subtle. For me it took something sooooo out of character for him before I realized.
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Old 10-15-2017, 01:14 PM #12 (permalink)
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Default Re: Als/ftd

Ok, I’ll lay it out… I’ve written about myself. I’m going to bring it up at my next ALS Clinic in a few weeks. For some reason I seem reluctant to. Anyway… maybe this could be some help to others.

I have noticed a difference in my focus and reading comprehension. I used to be able to read something and get to the real message, I could count the number of paragraphs and remember the number. Now I have to write it down. A special meal I’ve made a hundred times I’ve had to write down the step by step recipe. My train of thought seems to get lost too often. I had to do this on Word so I could keep editing it. Something I seldom had to do before. I could add up four, five double and triple digits in my head… now I have to use a calculator.

Emotion. Recently I hit big on a Scratch Off Lottery Ticket. Had to go to the Lottery Office to cash it. When I scratched it off and knew it was a winner I just handed to Ann. She went bonkers with happiness as did our relatives and friends.
I felt little emotion (joy) over it.. Yes, I was glad but I felt no excitement.
Then, recently we learned a very close friend has been diagnosed with Stage 4 cancer. Ann and others were really tore up even cried. I should have been emotional but it just didn’t come. A few other incidents too.

Now, I realize lately I have said things to Ann I shouldn’t have. Before if I did I immediately corrected myself… now it’s hours or the next day I realize it. Picking up something is wrong the way she was acting. I love Ann and I am dedicated to her… she mentioned I don’t say the little affectionate things I used to say. (So now I have a Post It sticker about that on my desk. ) And… Post It Stickers… I’ve got them stuck all over my desk. Before I seldom used them.

Spelling. Words I’ve spelled a thousand times now it seems Spell Checker is kicking in twice a sentence and several times it couldn’t correct what I botched and I have had to use the dictionary.

There’s more but this has taken me far longer to compose that it would have before.

So…

I’m way early into this. But… is it unusual for someone to recognize the early symptoms themselves?
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Old 10-15-2017, 01:36 PM #13 (permalink)
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Default Re: Als/ftd

Al thanks for your honesty.

You know how we say the only predictable thing about ALS is how unpredictable it is? Well FTD is rather like that too I'm afraid. It's a very similar reason - it all depends on exactly which parts of the brain are being affected and the speed of progression in each part as to what symptoms will be exhibited and how quickly they will progress.

There is also the language variant which may be closer to what you are experiencing. It's very complex as a disease and like ALS has an onset, but often ends up including all the areas. So like someone with ALS may be leg onset and end up with bulbar symptoms, someone with a semantic onset of FTD will still move into, or even include some behavioural symptoms.

Lack of insight may not happen - just as one person with ALS may continue to be able to use one arm or be able to walk til the end. It all depends on which parts of the brain are being attacked.

Possibly Ann could say she has noticed little things creeping along for a long time that you are still not aware of. She may not be fully aware, as Sooner said it took until certain things happened for the penny to drop for her.

I always say to people FTD is about patterns of behaviour - not instances that happen.

Al I know that you have mentioned creeping cognition issues a couple of times over the past year or so. FTD is usually quite insidious and creeps up like a thief.

here is an article on the semantic sides of FTD - use the links on the right of the page to quickly move through more information there
http://www.ftdtalk.org/ftd-factsheet...ssive-aphasia/


My Chris moved into this stage in the last months, as if not being able to talk wasn't enough!
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Old 10-15-2017, 02:31 PM #14 (permalink)
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Default Re: Als/ftd

Big Al........That took a bunch of testicular fortitude (balls) to share that with the forum. You just humanized yourself and I like you now!!!

I think some of your issues might be age related, that said there are unavoidable cognitive things that affect all of us. Many of the issues you revealed are a ditto with me. Lack of excitement, spelling, and sentence structuring are but a few things I am now struggling with. I have to carefully reread everything I write because I am starting to leave words out and my spelling sucks......etc. Concentration and comprehension are starting to affect me.

I am terrified of FTD as we all should be, and there is absolutely nothing I can do to prevent it.

ALS is pure HELL on earth!!!!
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Old 10-15-2017, 03:20 PM #15 (permalink)
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Default Re: Als/ftd

Al, I, too, am struggling with cognitive issues, really noticeable when I'm tired. I expressed my fears to my psychiatrist a while back. He indicated that lack of introspection can be a huge indicator of FTD, and the fact I was examining my own behaviour was a point in my favour. I see that as a point in yours too.

Tillie points out there are many flavours of cognitive decline, some subtle and others more overt. Mark points out that it may just be normal aging. I am saddened this is a concern to you and many others on this forum. Seems unfair to struggle with movement and physical function, and then also experience a spectrum of other mood, memory and executive issues on top. Whether it's normal aging or further effect from a neurological disease, it's a bummer, straight up. And it's entirely unfair to you.
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