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Old 09-04-2008, 09:06 AM   #1
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How does frontotemperal dementia make you feel

How does frontotemperal dementia make you feel

 
Old 09-04-2008, 01:43 PM   #2
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Re: How does frontotemperal dementia make you feel

Welcome Sharolbrust to the board. My husband had frontaltemporal dementia and like most dementias he started out forgetting things like how to balance a checkbook, drive etc and as the illness progressed lost his speech. I might suggest that you scan the internet for information specifically for this type of dementia for additional information. We were lucky because right up until the end, he knew all of our family. He became anxious and paced and lost most of his ability to speak clearly, but I always knew what he needed. Have you or someone in your family been diagnosed? This is a great place to come with questions or just to let loose when you're having a bad day. I hope this helps a bit. Keep coming back,

Good luck,
Janie

 
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Old 09-04-2008, 02:32 PM   #3
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Re: How does frontotemperal dementia make you feel

Thanks for the response. My concern is that my husband is feeling horrible. I can't get a doctor to figure out what is wrong and I want to know if dementia makes one feel shakey, weak, and out of balance.

 
Old 09-04-2008, 04:03 PM   #4
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Re: How does frontotemperal dementia make you feel

I can only speak from my experience. It would definitely depend on what part of the brain was effected and how it was effected but that has not be so with either of my parents. Dad with vascular dementia finally had leg problems but they were also for vascular reason. Mom has ALZ and it has definitely not slowed her down. Those effects come on eventually but usually not at the beginning.

Welcome to the board and I do hope you find the answers you are looking for. I will keep you both in my thoughts and prayers...

Love, deb

 
Old 09-04-2008, 04:38 PM   #5
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Re: How does frontotemperal dementia make you feel

Why do you think it's FT dementia? Did the doctor say that's what he thought he had? I would suggest a complete workup for your husband and if dementia is a possibility, I'd find a good neurologist who could order some neuro-psych testing that would show where his deficincies are. We had a ton of testing done and nothing really showed up until the psych testing.

Good luck,
Janie

 
Old 09-04-2008, 08:18 PM   #6
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Re: How does frontotemperal dementia make you feel

Yes, he has been diagnosed with dementia by a neurologist. I am just wondering if anyone out there suffered from ill physical health along with the dementia. My husband cannot function til well into the afternoon. This does not seem like just dementia. We have had so many tests we are getting discouraged. No one can tell us what is going on.

 
Old 09-04-2008, 09:04 PM   #7
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Re: How does frontotemperal dementia make you feel

Has he been checked for fear & depression? Has he specifically been diagnosed with Frontal Temporal? Picks? There is a myriad of *dementia's* out there all with slightly different presentations.

I mean to say, if I got the diagnoses of Frontal Temporal Lobe Dementia (which I'm sure my ex-charge had ... specifically more so .. Picks Disease) I would be physically ill KNOWING what changes will happen and I would be more than depressed knowing what I'm headed for!!

I've seen Early Onset in people just over the age of 50 and they tire easily with little effort (if any - just handling the chore of waking up and facing another day is too much at times).

Perhaps he has *early sundowning* .... although typically sundowning happens in the afternoon, it's not unheard of to be early morning (rare, but not unheard of) and so he comes good (or better) in the afternoon?

All theory & guesswork sadly ..... make the most of his *good* moments! If you can re-arrange your day perhaps so that your both resting in the morning and you can have your activities and such in the afternoons when he's more up to it? That might not be possible, but it's something to ponder perhaps. Remember, he is unable to stay in your world, reality and time-frames, so perhaps you could compromise somehow?

Goodluck
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... your loved one hasn't forgotten you ... the DISEASE doesn't remember you

 
Old 09-05-2008, 03:54 AM   #8
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Re: How does frontotemperal dementia make you feel

My husband did not experience physical ill health with his Pick's and was quite healthy all his life and right up til the end but this could just be a temporary thing or a characteristic of his illness. I too was very frustrated that after many tests no one could tell me what was happening. I think it's just the way dementia works and in my husbands case, he was only 52 when he was diagnosed and the doctors didn't want to believe it was dementia. Unfortunately, it is being diagnosed much younger now and the docs need to realize that and start looking for it sooner.

Love Janie

 
Old 09-05-2008, 08:50 AM   #9
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Re: How does frontotemperal dementia make you feel

Thank you for your kind information. I appreciate any new thoughts that are out there.

 
Old 09-05-2008, 09:01 AM   #10
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Re: How does frontotemperal dementia make you feel

Depression is no uncommon with dementia. Depression does have physical manifestation. There are times my Mom refuses to do things and uses physical excuses when it is in fact the depression that has accompanied her dementia. Mom was never depressed before. Her depression started with her realization that she had Alzheimer.

When she lost the ability to cook, she would "take to the couch" and tell us she didn't feel well to avoid the kitchen. I remember one weekend when my sister was seriously concerned that Mom didn't feel well. Mom has stayed on the couch all weekend, part of the time with her head covered by a throw. I arrived just before my sister left. As soon my sister and her children left I walked back in the house. Mom popped her head up and ask if she could get up now. A few minutes later we were walking around the block and she was fine. She thought she was supposed to cook for "all those people".

She is also a prime example of the early sundowning. She tends to get up early and brood herself into deep depression or rage. Getting her started after the brooding is difficult but it's not physical. She's in top physical condition.... when she's not sundowning or in a depression episode.

Doctor have a difficult time diagnosing dementias. There is not a blood test we can take. There are a miriad of symptoms and indications that fit together to lead to the diagnosis. Nobody wants to be told they have a disease that has no hope of a cure and doctor's don't want to give those diagnosis unless they are sure. Remember that medicine is not a exactly science. It's an educated guessing game. So keep educating yourself and requesting what you want from the medical community. Persistence does pay off.

Good luck.

Deb

 
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