Invasion of the Body Snatchers
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Katie C
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Barbie...I can honestly say I know EXACTLY how you feel! I was known to say I only took such good care of him because he USED to be Glen. Wish I had some magic advice for you.. sigh.
pscheffel
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I know what you mean. My Mom is still doing fairly well, but she is a completely different person. Very distant and quite. Not the same loving, cheerful, and vibrant woman I grew up with. When she smiles I still catch a glimpse.......
Barbie
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He is just not himself--very minor changes but sometimes ...grrr! When I posted this he was making me extra crazy. Most people who meet him would not know he is different but me and the kids feel like he is a different person but every once in a while he smiles like my old sweetie.
Katie, yes, I love him because of who he use to be (that is so sad!).
Katie, yes, I love him because of who he use to be (that is so sad!).
Katie C
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Barbie... that's what made getting a diagnosis so very hard for us. WE knew he'd changed, WE knew he wasn't Glen.. but because there were the obvious memory symptoms,etc they didn't say anything. In fact.. one therapist actually said Kevin and I were the problem,not Glen!
hangingon1
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I surely know what you are talking about. The hostility toward me in the last year has been unbelievable. I thought that I was going crazy until I realized that she was not the same person. Her thought processes and words are not the same. It is so reassuring to know that someone else has had this experience. I think that part of the problem is that visitors and friends do not get the WHOLE picture. Anyone can behave for and hour or so. It is the caregiver that realizes the vast changes mentally that ALS can cause. One of the things that really gets me is how she makes everything a big deal. She can fixate on the trivial until it runs me crazy. OCD behavior is exhausting. Sometimes at night before bed I am so tired of spending and hour on the trivia she thinks is a big deal. The best thing to do what they want and not say anything. Just pray for the patience to carry on.
poppy62
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I've just come across this thread and I love it...someone has invaded my husbands body to be sure...he hasn't got ftd, got bulbar als, but he is not the same sweet man who proposed to me on one knee alongside a canal, with five ducks for witnesses...
I particularly can identify with what you say Hangingon1, about the fixation on trivia that can go on and on...and about behaving when others are about...
I am learning to 'let it go', 'get over it', even when its not my fault cos its a damn sight easier than reliving the same scenario for a what can be several hours, and just when I think it's died down, he'll stoke the fire with comments again...grrrr, gimme strength...and patience, I'm only human...
I particularly can identify with what you say Hangingon1, about the fixation on trivia that can go on and on...and about behaving when others are about...
I am learning to 'let it go', 'get over it', even when its not my fault cos its a damn sight easier than reliving the same scenario for a what can be several hours, and just when I think it's died down, he'll stoke the fire with comments again...grrrr, gimme strength...and patience, I'm only human...
glupavomomiche
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I'm so sorry, Barbie 
ottawa girl
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Barbie -
Thank you for reminding me to be especially mindful of my husband's heart! I pray every day, that I will be as patient & loving as possible (so long that I am in control of my mind) as we navigate this new life. I dread the idea of sucking the life out of my husband - above anything else - this is my greatest fear.
Your husband and I are truly lucky - each of us is blessed with an extraordinary and loving spouse. I think your husband will agree.
Thank you for reminding me to be especially mindful of my husband's heart! I pray every day, that I will be as patient & loving as possible (so long that I am in control of my mind) as we navigate this new life. I dread the idea of sucking the life out of my husband - above anything else - this is my greatest fear.
Your husband and I are truly lucky - each of us is blessed with an extraordinary and loving spouse. I think your husband will agree.
Katie C
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Poppy... you say your PALS doesn't have FTD and yet you say he has bulbar als and go on to describe behaviors common with FTD. Has he been evaluated? Because if it IS FTD there could be some medications that could make both of your lives more comfortable and lessen the stress. Nothing will remove the stress, but making it easier is something anyway.
poppy62
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Hi Katie,
I have thought about his behaviour a lot because it hasn't happened overnight since his diagnosis, he has been more 'difficult' (for want of a better word) for over a twelve-month at least, way before his diagnosis in May 12. He had some slurring and swallow probs that far back too. He has long-term anxiety issues and we just put things down to that really. I actually am careful not to say the wrong thing, in case it starts WW3! He has not been evaluated, I couldn't see him agreeing to it. He keeps telling me his mind is okay, it's his body that is done for. We get to see his MRI when we next see the consultant, she did say about wear and tear, was vague about it really, so I do have questions now I know a bit more than I did, thanks to the great people here, willing to share what they know..
Does the ALS/FTD work like the dementia in the elderly where they lose inhibitions and no longer know their family even?
There is so much to know...bless you for your input in my education
I have thought about his behaviour a lot because it hasn't happened overnight since his diagnosis, he has been more 'difficult' (for want of a better word) for over a twelve-month at least, way before his diagnosis in May 12. He had some slurring and swallow probs that far back too. He has long-term anxiety issues and we just put things down to that really. I actually am careful not to say the wrong thing, in case it starts WW3! He has not been evaluated, I couldn't see him agreeing to it. He keeps telling me his mind is okay, it's his body that is done for. We get to see his MRI when we next see the consultant, she did say about wear and tear, was vague about it really, so I do have questions now I know a bit more than I did, thanks to the great people here, willing to share what they know..
Does the ALS/FTD work like the dementia in the elderly where they lose inhibitions and no longer know their family even?
There is so much to know...bless you for your input in my education
lms9258
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Hi poppy,
This is the "ALS and FTD" section here on the forums. I'd suggest reading some of the threads here to get a better idea of what FTD encompasses. I'm not sure, but I think Katie has posted some links on here that can help you to learn more about it. As to your question about "the dementia in the elderly", yes to losing inhibitions--no to forgetting who family members are. FTD is very different than the Alzheimer's type of dementia.
Also, it's not uncommon for people who have FTD to refuse evaluation and insist nothing is wrong with their mind. MRI's don't always confirm FTD. My mom's didn't. As you learn about it, the more you will see why it is so very difficult to get a d x. Persistence is the key. I have seen many cases where the lack of proper evaluation results in CALS, and other family members just trying to deal with the "difficult" behavior. On top of managing the ALS, it is VERY hard. With a d x, there are meds that can help to make life a little easier. My advice, is to keep learning about it. Knowledge is power. Best of luck to you,
Laura
This is the "ALS and FTD" section here on the forums. I'd suggest reading some of the threads here to get a better idea of what FTD encompasses. I'm not sure, but I think Katie has posted some links on here that can help you to learn more about it. As to your question about "the dementia in the elderly", yes to losing inhibitions--no to forgetting who family members are. FTD is very different than the Alzheimer's type of dementia.
Also, it's not uncommon for people who have FTD to refuse evaluation and insist nothing is wrong with their mind. MRI's don't always confirm FTD. My mom's didn't. As you learn about it, the more you will see why it is so very difficult to get a d x. Persistence is the key. I have seen many cases where the lack of proper evaluation results in CALS, and other family members just trying to deal with the "difficult" behavior. On top of managing the ALS, it is VERY hard. With a d x, there are meds that can help to make life a little easier. My advice, is to keep learning about it. Knowledge is power. Best of luck to you,
Laura
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