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1471082 tn?1286757000

frontaltemporal dementia

My husband has been diagnosed with this disease. more commonly known as Pick's disease. While I understand the disease and  what is going to happen and the mortality rate, none of our doctors can tell us what to expect day to day. We are learing on our own and its pretty mind blowing. here is my question. He is in so much pain daily. Pain he did not have even 2 years ago.  his balance is precarious and he cannot excercize daily as his legs are so swollen its difficult for him to walk. Is this normal since his brain is basically misfiring with the atropy... and how long and at what  rate is the progression.
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1471082 tn?1286757000
we are in  yr 4 of  this disease. He has  times where he cannot  remember words and has a speech impairment. he cannot remember simple things and if we plan something it has to be a week or more in advance and we have to remind him constantly about it. there can be no surprises. memory is a problem as he has no short term day to day.
there is no  parkinsonism rigidity occuring and he is not  incontinent. he actually is going the other way with his personal hygiene. He is  hyper clean. He is not  violent in any way. he does  lose his temper but he yells. alhtough he does not  remember this the next day, he has no empathy at all .. little things get on his nerves. we have been to a behavioral specialist who advised us to set a schedule and use it religiously. any deviation upsets him. they say there is nothing more they can do as he wont remember it .
We have set up a man cave for him and he is the only person allowed in there. he does not like other people in his space.  he wants things where he puts them. we cannot move things when he sets them down. he has trouble concentrating on things. his mind wanders and he  cannot concentrate on things for long periods of time.
He has been diagnosed with type 2 diabetes, stage 1 renal failure, high blood pressure, acid reflux and  high cholesterol. he is on meds for each and  lexapro for  depression.
can you explain to me about brain atrophy. I  dont know much about it . I looked it up and there is not much out there about the actual aspects of it and the problems it can cause.
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Avatar universal
MEDICAL PROFESSIONAL
Welcome mam, to the neurology forum of medhelp. Thanks for writing in. I understand how it must be to be living with a named disease without knowing what to expect from it. The clinical spectrum in the first two years shows psychiatric abnormalities involving the frontal lobe. Some may become aggressive and socially awkward like may steal or show obsessive or repetitive stereotyped behavior. There may be a lack of concern, apathy or decreased spontaneity. They may become depressed. Speech and language abnormalities begin early with rapid progression.
Unlike Alzheimer’s disease urinary incontinence can occur early. He may have parkinsonism with rigidity and impairment of gait.
He would be unkempt, may repeat words, imitate you, some primitive reflexes which are normally absent in individuals may become obvious like grasp, suck and snout. There is minimum or no body movement or rigidity. A resting tremor may come up if there is parkinsonism. He might have difficulty in naming common objects or pictures. He may have problems with keeping personal hygiene. He  might withdraw socially, be unable to emote, empathise or sympathise. The  pain needs to be investigated as it Is not a direct consequence of the disease. There could be some injury that might have been missed, some joint stiffness, some infection ongoing, or any other diease process awaiting diagnosis. Swelling of legs could be due to osteoarthritis, hypertension, renal impairment. So please consult your treating neurologist to have a look and refer you or suggest you to consult an orthopaedician if required.  If he is already not taking, he may require treatment for agitation or aggressive behavior. Hearing aids, glasses or cataract surgery if appropriate. Behavior therapy might help by ignoring inappropriate and rewarding good behavior. Reality orientation may help reduce disorientation. I hope this is of some help.
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