Recent content by Deety

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    CALS Roll call

    Dreary here today and I've been gone from the forums for a week. We got two new kittens to add to our menagerie and they have kept us busy. My husband loves watching them and one curls up on his chest and purrs his little heart out. So nice to focus on something other than ALS/FTD for a while.
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    Family matters

    Oh wow. That's awful. I've been told my husband's ex wife has more right to grieve since she was married to him longer. Sigh.
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    Yes--I'm Breyan Neyland on Facebook. I just sent you a Friend Request. Thank you!

    Yes--I'm Breyan Neyland on Facebook. I just sent you a Friend Request. Thank you!
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    Happy new year, Tillie! Yes, I'd love to be pointed to the private forum you mentioned. Think...

    Happy new year, Tillie! Yes, I'd love to be pointed to the private forum you mentioned. Think I'm going to need it :)
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    FTD or just difficulty processing directions/information

    scaredwifetx, I hate to say this but I'm so grateful to hear that other people have doubted themselves too! I was just explaining to a friend that I've become the briar hag (I was a Dungeons and Dragons player before all this)--I shriek and say horrible things and rage, thinking that surely I'll...
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    FTD or just difficulty processing directions/information

    Thankfully his dad will have the car sold as soon as possible. We both feel torn because we're colluding against my husband/his son, but we both see it's necessary.
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    Conflicted...aren't we all?

    Nuts, thanks for bringing up Tillie's book! I plan on getting that today!
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    How do you plan things?

    Hi Katie, That's what I have found so frustrating--we just can't plan anything. When we got the diagnosis, we planned out four three to five day weekend trips. We managed the first one, then our big holiday was a disaster, and the short third holiday without me was even worse. Now we're...
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    My wife has been diagnosed with MND-ALS + FTD

    Hi Dave, I've been thinking of you and Julie over Christmas. I've had a very hard time suddenly becoming the "mother" of my husband and imagine you know that feeling. It feels like I am much more prepared to deal with the physical symptoms of ALS. The FTD, even though ours is "mild" and may not...
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    FTD or just difficulty processing directions/information

    Hi Tilly and Dave and everyone! I hope you had a good break. My lovely husband had testing done on Christmas Eve and, as I suspected, he has bvFTD. Actually, we only got about an hour into the 4 hours of testing before his neuro and psych called it off, saying that things were clear. They said...
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    FTD or just difficulty processing directions/information

    Good points! My mantra thus far has been that every decision he makes affects me and his family as well, and the driving affects or could affect so many others and in truly horrible ways. Yes, the doctors wanted to have him tested specifically for FTD. They noticed things at his last...
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    My wife has been diagnosed with MND-ALS + FTD

    Dave, I think about you and Julie a lot. And I hope you are able to take care of yourself a bit over the holidays. (While my husband was away overnight with his college friends, I slept. And slept. And slept.)
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    FTD or just difficulty processing directions/information

    Update: His doctors actually called me on Thursday to talk about signs they had noticed at his last clinic visit. We are doing a battery of tests tomorrow--so relieved! Thanks for the info about driving and the POA--I've brought that up to the nurse and she said the docs would address that. It...
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    My wife has been diagnosed with MND-ALS + FTD

    Oh Dave, my heart goes out to you and to Julie. This is just so awful. I'll be thinking of you both, for all the good that does. I remember when we were waiting for the diagnosis and we kept saying "maybe it'll just be cancer or a tumor," because even then we knew it would be a cleaner death...
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    FTD or just difficulty processing directions/information

    In a complete turn-around, my husband had me added to his accounts yesterday and those accounts will at least pay for any medical debt and might even pay off the house. This kind of whiplash is exhausting. But I'm working with my lawyer, too, to protect us, and his father, at least, seems to...
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