Old 04-05-2014, 06:43 AM #1 (permalink)
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Default article I found helpful

I found this and wanted to share it.

For me this explained a whole side of my PALS FTD that I hadn't really clicked on to, even though I knew it was part of the FTD, the article gave it such clarity!

http://alsn.mda.org/article/when-thi...in-go-awry-als



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Old 04-05-2014, 07:32 AM #2 (permalink)
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Default Re: article I found helpful

Thanks, Tillie --

The more I learn the less I want to know ...

>When the Thinking Parts of the Brain Go Awry in ALS | MDA/ALS Newsmagazine

Appel is really quite a guy. He will be 81 next month and he is still going strong ...
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Old 04-05-2014, 07:52 AM #3 (permalink)
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Interesting, thanks
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Old 04-05-2014, 04:14 PM #4 (permalink)
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Default Re: article I found helpful

Here's another - have hope

I Know All About Bad Days with ALS | MDA/ALS Newsmagazine
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Old 04-25-2014, 04:25 PM #5 (permalink)
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Default Re: article I found helpful

Good article Tillie. We were very lucky to have had Dr Loemen-Hoerth actually diagnose Glen's FTD! I think the last paragraph of the article really says it all... knowing the behaviors are part of this particular variant of the disease is a game changer! I was much more patient once I knew the behaviors weren't just Glen being a jerk. I went from the brink of divorce to a much more patient caregiver.

Tracy.. when dealing with the cognitive changes of full blown FTD, there actually comes a time when false hope is detrimental especially for the caregiver. That step where we realize and accept that the person we loved isn't coming back... that's when we can start caring for the person who is still here. While fully acknowledging how devastating the physical symptoms of ALS are, the psychological changes of FTD with or without ALS are sometimes unbearably painful for the caregiver. It feels as though the behaviors are deliberately aimed at the caregiver, and there is a level of anger towards the caregiver that is hard to explain.

Again, Tillie, thanks for the link. I will add it to my list of "helpful reads."
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Old 04-25-2014, 06:34 PM #6 (permalink)
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Default Re: article I found helpful

Very interesting! I find myself losing my thoughts in mid sentence, having odd thoughts, could be medcine side effects, you never know.
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Old 04-26-2014, 11:13 PM #7 (permalink)
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Default Re: article I found helpful

I haven't been on the forum for a very long time but am glad to see this. Dr. Appel is spot-on. My husband had obvious FTD first, followed by Bulbar ALS fairly soon after. Katie C says it so well. I too did a 180 degree turn in my approach to him when I realized he was not a "jerk" as Katie says. I also was on the edge of divorce. Once I understood that his behavior was due to his illness, it was like a switch flipped. My anger turned to understanding and compassion. It's no different than getting mad at a person with no legs who cannot walk. A person with no executive function cannot care.
But we still can.
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Old 04-29-2014, 01:52 PM #8 (permalink)
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>But we still can.

CALS are very special
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Old 05-29-2014, 05:27 AM #9 (permalink)
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Default Re: article I found helpful

I'm a bit late finally getting back to this thread but it's true - realising it is FTD is critical for the CALS. I would have ended up hating Chris if I hadn't been aware of what was happening to him.

I admit I still battle with flash memories of some truly hateful and spiteful stuff, but I tell the memories firmly to jack off as that was NOT him, it was the monster, the same as the drooling, choking, wasting.

We don't love our PALS any less because their hands waste away, but it's so much easier when you can see the physical wastage.

I now mostly remember my Chris for how he was, but reading an article like that again just brings it all flooding back.

I don't want PALS here to read this and start to worry about any little thing. It is definitely patterns of behaviour and behaviour that was not normal for how you were.

Thank god FTD is becoming more recognised so some relief can be offered with medications to the PALS and comfort through understanding it to the CALS

Cereus your post really struck a chord with me - that's EXACTLY how it was!
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