March 22, 2005

One Minute with Picks Disease

(Reprinted from my newsletter - Spring '04)

People occasionally ask me how my dad is doing. I generally don't know how to answer that question, not because I'm not around my dad enough to know, but because its not really the right question to be asking. My dad is pretty much the same from day to day and month to month. He doesn't know what has befallen him so there's no sense of "how is he doing in dealing with his disease." He doesn't deal with it. He doesn't realize it. To him, there is nothing wrong. He doesn't remember that he doesn't remember. He has no emotions about it.

The better question to ask might be, "How is your mom doing?" She's the one who is most often frustrated by dad's constant flow of questions (the same questions, over and over and over and over...). She is the one is who has to deal with dad at the check out counter when he says (rather loudly and in great alarm), "Fifty two dollars for groceries?! That's too much!" She is the one who has to plan her events around whether or not one of her daughters can watch her husband.

So, I thought that, in order to give my readers a better sense of this disease, I'd give you a peek at one minute with my dad. A typical minute together would go something (if not exactly) like this: (You may want to read this outloud for full effect. And feel free to pause a few seconds between questions. That's about how long Dad waits.)

Les: Did Mom tell you what her schedule is today?
Meg: She'll be here at 5:15 to pick you up.
Les: Did she say what she's going to do before that?
Meg: She's at work all day until 5 o'clock.
Les: Do you remember what day this is?
Meg: Wednesday.
Les: Wednesday. (Pulls out daytimer and looks it up.) That's right. The day Mom works.
Meg: Yep.
Les: So you want me to fold the laundry that's in the dryer? (He says as he reads the list I made for him that says exactly that.)
Meg: Yep.
Les: Let's see. Do you remember what day this is?
Meg: Wednesday.
Les: (Pulls out daytimer and looks it up.) Yeah. The day Mom works.
Meg: Yep.
Les: Do you know if she's coming to get me after that?
Meg: Yep.
Les: She is? What time?
Meg: 5:15
Les: Oh, 5:15. (pause) So you want me to fold the laundry that's in the dryer?
Meg: Yes, dad.
Les: Hmmmm. Did Mom tell you what her schedule is today?
Meg: She's at work, Dad.
Les: Do you know if she's going to pick me up?
Meg: Yep.
Les: When?
Meg: 5:15
Les: Oh. So maybe I'll go fold the laundry that's in the dryer.
Meg: Yes Dad, why don't you do that.
Les: Do you remember what day this is today?
Eventually Dad will go and fold the laundry, but not until there's been several minutes worth of the above discussion. Now imagine being with him all day....

* * * * * * * * * * * * * * *

of course, that was a year ago. he's much worse now. here's a quick example of a recent conversation with my dad.

Les: I'd like to take your dog for a walk.
Meg: She's got 7 stitches in her foot, Dad. She can't go for a walk today.
Les: (looks down at dog. notices bandage.) Oh. yeah. Well, I'd like to take your dog for a walk.
Meg: She can't go for a walk dad. She's injured.
Les: (glances down at dog) Oh. Well, I'd like to take her for a walk.
(it goes on like this until i finally distract him by encouraging him to work on a puzzle. or until i remove the dog from sight in hopes that he might forget about her.)

120 comments:

  1. he's 61 and physically he's in fantastic shape. he and my mom went hiking recently and after 5 hours of hiking they arrived home and my mom crashed. (and she works out every day, so she's no chump.) dad went out for a two hour walk.

    if you were to see him walking past, you'd have no idea that anything was wrong with him. but if you were sitting here right now listening to him go on and on and on and on and on (can you tell that i'm sick of it) about how is he getting home tonight? and when are they picking him up? and how is he going to pay for the ride? you'd understand just how messed up he is.

    he was first diagnosed when he was 56 and we noticed that something was definitely wrong with him a year or two before that. and looking back at incidents from 10 - 15 years ago, we can see that the symptoms started long before we even knew anything was up. we initially just thought he was getting a little weird in his old age.

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  2. What kind of symptoms did you see?

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  3. one of the first things we noticed was a fixation on ukraine. he's always been interested in ukraine (he's full ukrainian by nationality -- his grandparents all came over and he grew up speaking ukrainian with them -- and his dissertation was on the economic situation in Galicia (a part of western ukraine) during the late 1800's) but this was much different.

    rather than knowing about ukraine and bringing it into conversations when it was appropriate, he started talking about it constantly. the post office reminded him of the post office he saw in ukraine. the homeless man reminded him of the homeless people in ukraine. (and so on.) and he'd start speaking in what he called ukrainian (though a fair bit of it sounded more like russian to me) to people who had NO CLUE what he was saying.

    he also started doing other things that were inappropriate. when we went to a restaurant and saw a sign that said "no dancing" (implying that all the dancing had to take place upstairs) he immediately broke out in the hopak (a ukrainian dance). once when he was visiting my church in detroit (a fairly mixed church racially) he broke out singing "amen" (a song where all the words are just amen) at the end of the service. i don't know if he associated the song with black people or what the deal was, but he seemed to think it was appropriate when all of us thought he was cracked.

    he also complained about forgetting things, but he didn't really forget all that much compared to how weird he was acting. and he never started writing lists like i hear alzheimers patients do.

    when he was diagnosed with the disease, he would tell people without any sign of sadness. that's another symptom of the disease, loss of emotion. my dad has always been the most emotional member of our family. but he stopped caring about the stuff that he used to care about. (didn't pet the dog any more. didn't play with the grandkids.)

    he also started punning Constantly. at first i just chalked it up to him being male, but i found out later that something happens to the processing of language, so that he'd find puns to be infinitely funny when everyone else thought they were just stupid. even today he still has some language thing going on. he can make word associations even when he doesn't know what the words refer to. every time he passes laurel street, he says, "hi laurel. how's hardy?" but if you ask him who laurel and hardy are, he doesn't have a clue. but he will say it EVERY TIME he sees that street, without fail.

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  4. Wow, thanks for these marvelous notes, Meg!

    If it wasn't you're own dad, such details make for a fantastic study of a mind in "reduction". I see many of these same traits with the dementia people I do art with. I don't have the same continuity to recognize patterns as you have with your dad and I don't know specific diagnosises, and of course for me it's not so personal.

    What most impresses me is the persistance of the "dignity" of spirit in these people we consider as lossing "function". By and large, it's a profound state they are going through, worthy of our attention and unbiased witnessing. I sense that perspective in your notations, Meg. Such a gift. Thank you!

    How do you feel about the decline you see in your dad from year to year? Are you hopeful that it might be different than it is, or are you accepting of him as he is becoming what he is becoming? If there was one thing you could change, what would it be?

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  5. I was thinking of this the other day and had a question for you. I was in Fred Meyers (its like Target but better imo) wandering around & shopping when it popped into my head (I have no clue why lol). Does someone with Pick's remember relationships. Would he remember me this week if I had met him last week. This might be a dumb question but I was interested in how Pick's affects relationships in that reguard. I could assume things about this but we know where blind assumptions lead!

    That said, I wish you could have your father back the way he was (or would be now minus the dementia).

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  6. You know I do not believe in one, but it's people like you who make me hop I am wrong. You deserve one, and one of the greatest kind.

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  7. Thanks for your thoughful reply, Meg.
    My heart goes out to you.
    Many Blessings.

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  8. yes and no.

    he remembers me (and as recently as last year could even tell the difference between myself, my sis and my mom on the phone. something non-dementia people sometimes have trouble with). he remembers my sis and our husbands. he knows my son's name but not my daughters (but they're identical twins so many people can't tell who's who.) he knows my mom and i think he remembers some neighbors (who he sees regularly).

    but he doesn't remember people at church (who he only seems once every few weeks). though he still greets them quite happily and if my mom hints at what their name is ("oh look, les. there's tom.) he'll call them by name.

    two years ago we pulled out a picture of my dad's cousin sandy, and he could identify her. but when we saw her at his dad's funeral, i don't think he knew who she was. (he also went up and kissed his dead dad a few times, and the next day would ask where his dad was. it was quite unsettling for my poor grandmother.)

    so i think the concise answer to your question would be that he remembers people that he sees with frequency and quickly forgets all others. he's forgotten all friendships, relations, etc. that he is no longer involved with.

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  9. thanks, Cindy. smiley('cool');

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  10. I echo those sentiments as well. For me, the hardest part of atheism was accepting the finality of death. I would love to be wrong on that, though my mind can't see it any other way...

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  11. Sorry to get off topic, but how the heck did you put two independant quotes within your reply? Cool.

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  12. A (distant) relative of mine had Picks. He would bike around disoriented, get himself arrested and treated badly by the cops because they thought he was either a drunk stray of just someone messing with them.

    Sad.

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  13. that's exactly what i worry about.

    you'd never know anything was wrong with my dad unless someone told you. you'd just think he was being obnoxious by asking the same thing over and over, or acting beligerant or rude.

    we've tried to clip something to his shirt and he'll just put his jacket over it or take it off and set it somewhere (and forget where, of course).

    we've tried a medical bracelet but he refuses to wear it.

    i'd like to tattoo something to his forehead, but he probably wouldn't sit still long enough. (ok, ok. so i'm joking. hey, you've gotta make fun of it all sometimes.)

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  14. You could get one of those tattoos you lick lol.

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  15. Well Meg I don't know where to start. This is very odd for me since your stories are just like I'm telling them. I am 28 years old and my father was diagnosed with Picks disease 4 years ago. He is 54 years old and is in very good physical condition just like your dad. To look at him walking down the street nobody would have a clue he is like a child again. Your stories were way to close to home. I am so worried about my mom. She is our rock. I'm not sure how she does it day after day with all the stress and "stuff" but she is by far a stronger woman than I. My dad has taken a huge decline in the last year and can no longer be left alone. Not even for 10 minutes. He is not ready for a home yet but definitely needs someone there all the time. My mom is still working full time (with no choice) so she has home care coming in the whole time she is gone. This is going well so far. I am so glad our family found this site. It sure is reassuring to know that we are not dealing with this disease alone. I would like to thank you for sharing your stories on this site and letting people see what Picks disease is all about. I look forward to hearing from you.

    Sandra

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  16. Okay...finally someone who will understand....only with me it is my mom. She just turned 60 and has been this way for about 6-7 years depending on how you look at it....lots of signs we just overlooked, I guess, and very difficult to diagnose!! My mom is much more progressed now, her language is incoherent, and she requires full care...if we help her up, she can still obsessively walk in circles until I sit her back down....she is home with us, just so we can catch brief glimpses of her once "self". My dad, who copes by drinking does his best but this has been going on so long, he has already lost his mate!

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  17. does your mom have alzheimers or picks?

    it's sounds like your mom is pretty far past where my dad is. (he also just turned 60.) he can still talk fine and my mom even got him to add up some numbers recently! but he keeps confusing my mom, me, and his mom (which is a fairly new progression). and he's STILL getting the cops called on him when he looks for coins in parking lots. (grrr! why does my mom let him do that?!!!)

    so are both your mom and dad with you, then?

    we've got a dementia group here on multiply. so far there's just a few of us, but i'm going to send you an invite so we can chat more there if you'd like. :-)

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  18. What's the source for his obsession with coins? Did he used to have a coin collection or is it just something that formed?

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  19. he has gone through a series of obsessions.

    the first one sorta made sense -- and obsession with all things ukrainian. (he's of ukrainian descent, has been there several times, and wrote his dissertation on the economic situation in Galicia (in the western half of Ukraine) during the late 1800's (when the Poles ran the place).) he would bring everything back around to ukraine. you could mention seeing a helicopter in the sky and he'd say, "that's reminds me of the helicopters i saw in ukraine." he also started speaking a ukrainian/russian blend to people who had no clue what he was saying. that's one of the key things that put us onto the fact that something was wrong with him.

    then he started going on about saint andrew. (i think it was andrew. now i'm forgetting.) he liked to tell how he witnessed to cannibals (true), then went to ukraine and witnessed there (true), then was crucified and died in kiev. (um... not sure on that one.) then he rose again (*sirens go off. something's wrong here.*) and went to ireland to preach to the people there. (ok. now we know for sure something's wrong with dad. then again, he had already been diagnosed at this point.)

    then he went into a Finn McKool and Ireland phase. (My dad's birth surname was Kulchesky but his dad changed it to Kool when he was 3.) my mom is partly Irish so he started going on about wanting to visit my mother's homeland. (not that she'd ever lived there.) he also went on about seeing the Urquhart castle (my gram was an Urquhart.)

    so now he's in a coin searching phase. my mom sometimes throws coins around the floor downstairs in their house and my dad will go wander around looking for them for chunks of time.

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  20. /me sends moral support and ghey unicorn hugz

    That's got to be hard on her, and on you and your siblings, to see.

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  21. hi my name is cathy.im sandra's daughter.she asked me to come and join so here i am.my husbands only obbession these days is tidiness and smoking.the tidness keeps me on my toes cause everything has to be in its place and not moved.if you dust and move things around he notices instantly and is confussed and has to have them back in the right place.it is sure good to know you are not alone with this stupid disease.

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  22. you sound just like my mom!

    i'm glad you've joined the group. now if i could just get my mom to get posting to the group too....

    is your husband on any medication? my mom just started something new with my dad and it really seems to help. he's much less agitated and sleeps a lot more. i'll have to ask her what it is so i can post it here. it's made a major difference. (it slows him down from asking a question 50 times a minute to only asking 5 times a minute. lol!)

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  23. rod was on reminyl ans celexa(something like that)which is an antidepressant but the specialist found it not working right so now hes onseroquel quetiapine which is an anti sycotic med. it would be nice if your mom joined because ive never talked to anyone that has picks it is always alzheimers which is sad to say but they are always older and has to be handled differently. thanks for replying

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  24. My Uncle was diagnosed with Picks disease about 2-3 years ago. He's 56. His mother had Alzheimer's and I believe he had been originally diagnosed the same. He lives pretty far away from me. I've seen him about once a year for a few days at a time since he was diagnosed and I've noticed significant changes in his symptoms. The first time I saw him (after I knew what was going on) I was really scared. I wasn't sure that I would be able to not only have a conversation with him but be able to tell that it was, in fact him. All I noticed was that he repeated his stories about the dog, or his neighbors, or his kids. And he didn't seem to care or even be able to understand if you politely tried to tell him that he'd just told that particular story. The only other things that I remember from that time was that he was a little paranoid (he was afraid of someone breaking in) and he had lost all sense of direction (which had once been one of his strong points). When I saw him a year later his symptoms had severely worsened. He was much more child-like. He had to be watched every minute. He didn't have any problem remembering anybody (the family had gotten together for a wedding). We did have a problem with him running off. He also found the dessert table and stuffed his face over and over. His wife had purchased some non-alcoholic wine and given all the servers a bottle so they could refill his glass (small town, they all know him). His speech had become very simple. He has about 3 or 4 phrases, "isn't that interesting" and "you don't say" I can't remember the others. he had also taken to stretching the truth. When talking about the old sports days he added about 100lbs to my dad's weight. Even as someone who only sees him once a year, I can still see the little glimpses of him the way he used to be, a smile sometimes or a laugh, and sometimes even a story that relates to the currant situation. My Aunt says that he seems better for the first while that he's around people he doesn't see everyday though. All I know about his state now is that he has been going to daycare a few days a week. His family has tried the best they can to keep him stimulated. He has reached the point where he can never be alone. Some of his children moved closer to home to try to take some pressure off their mom.

    I've found reading all the messages here very refreshing to read. It's very nice to know that my family is not alone.

    thank-you

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  25. My name is Lissa. I am 24 and my father was diagnosed with picks disease 3 yrs. ago. He is now 53 and the disease is progressing rapidly. Unlike your dad mine hasn't been able to speak for about 4 yrs(long before he was diagnosed). And by the sound of it, it may be a blessing in disguise!!lol He is very sweet and laughs a lot. Which I heard is not common with this disease. He loves to sit with you and rub your hand. His obsession is gum. He panics if he runs out. He goes through about 60-80 pieces a day! I moved back home a year and a half ago to help my mom but I soon realized how tough her job was. It is great to have this website. I would never have imagined how differently this disease affects different people.

    He was a pastor for 23 yrs until he lost his voice. He watches home movies of him preaching and sits and cries sometimes. He is still very emotional although more progressed in other areas of the disease. He cant control his bladder and some days he looks into space for 12 hours straight not able to get his attention. He used to be very active up until the last year.

    He was arrested about a year ago. He liked to walk to his moms house sometimes, no big deal he has a great memory of places and people. But on this paticular day he decided to take his play gun with him(obviously without our knowledge). We got a call a few hours later from the police department. By the time we got there he was hysterical and his wrists were bleeding from the cuffs. Luckily someone at the station knew our family or who knows what could have happened. So I definately agree with you on the public awareness issue. The cop could have shot him if he hadn't gotten a good look at the play gun.

    I wish you and your family the best and God bless

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  26. My name is Vicky and my sister has been diagnosed with Picks. The only thing I haven't found info on is the fact that she hears voices and sees people that aren't there. She has started carrying on conversations with the voices and even set the dining table for a dinner party one afternoon. She prepared salads and fixed meatballs with spaghetti sauce. She said that her friends were coming over. Well, we all new that there were no friends but we have to go along with her because to her these people are very real. Has anyone else experienced this?

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  27. wow, i've never heard of anything like this. (i've also not heard of a woman with picks. i know they're out there. it makes sense. but of all the people i've met or heard of with picks, every single one has been a guy.)

    could this be another illness on top of picks? or do the doctor's think it's all related?

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  28. Hi. I have been with Vinny for 29 years. In 2000, when he was 57 I noticed some atypical behavior. By 2002 he had become so self centered I left him. I thought he was becoming a mean old man and I couldn't reason with him. He started playing tricks on me and doing things to me that I couldn't take. Almost 3 years later, to the day, he showed up at my office and told me he had 'dementia'. He couldn't speak easily and he was overdosing on Aricpet, Namenda and Asacol. As soon as I realized he was sick I moved back to take care of him. He will be 63 soon. We spent the last year at the University of Gainsville, the Mayo Clinic, with neuro psychologists, neurologists, and have eliminated all but "Picks Symptoms". His temper is often not good. His speech is almost non-existant. Physically he is strong - but slowing alot. He cannot be alone at all (except I walk twice a day for 1/2 hour or a bit more). He will watch the same movie all day. He goes to the bathroom every 10 minutes and I wonder how this does not exhaust him. I work from home on the computer and have much guilt about not getting him out and about more. ( I do take him somewhere at least once a day, even if it is only to the grocery store). He is fixated with his rings, wallet and glasses. He takes them on and off, on and off, on and off. He gets up to go to the bedroom to take a rest, gets undressed, lays down for a minute or so, then gets up, gets dressed and goes back to the TV in LR. If I try and get him to do something he gets angry, yet he'll get up at 3 am and do laundry. No voices, few smiles, no conversations. Just lately he has stopped taking showers voluntarily and gets angry when I insist. He does do what I tell him to do, but he almost always angry about it. I try not to think too far into the future, but I do know a day will come and I will not be able to keep him safe. I am looking into adult day care for at least 3 days a week. I am thinking about setting up a home where we could live and have another couple like us live there too. We could share the caregiving, but I guess this is a really wild idea. Thanks, it was nice to read about so many others that are going through this, however different each case is, it is all unbelievably sad. Believing that there and only 3 important things in life gets me through, they are:
    1. To be kind.
    2. To be kind, and
    3. To be kind. Love to you all...

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  29. I work in a nursing home in southeast alabama. We have a young woman who is 57 years old with a diagnosis of Pick's Disease. Her family says she was diagnosed in 2000. They do not offer very much information, just sketchy tidbits. She walks very slowly. She may come up to you and stare into your eyes with a puzzled look on her face as if she has something to say but cannot get the words out. You can tell this is very frustrating to her. Sometimes she cries but is unable to say what is wrong. She is very conscious of her diet and refuses anything high calorie, will put her hands on her stomach and gesture that she will gain weight. She was in to health foods and exercise prior to her diagnosis. Last week she was in my office many times, staring at me with the puzzled look on her face. After going through the list of things I usually offer to her and not having any success, she went to the desk of my co-worker and knocked everything on the desk to the floor with tears running down her cheeks, she said "I'm tired of this s***". That is the very most I have ever heard her say at one time. About 30 minutes later she said, "daughters". I assume that she was upset because her daughters (three of them) had not been to visit for a long time and she missed them. She requires a lot of assistance. We hand her a toothbrush and she stares at it like she does not know what to do with it. The same with a washcloth or a sweater. The only obsessive behavior I can identify is that she tears paper towels in half, wads them up and puts them into a basket in her room. She does not like to change clothes so we have to take her laundry into another area to prevent her from putting it back on or in her dresser. It is very difficult to watch her suffer through this.

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  30. to dsellers: thank you for your note. I am Sue, the person who wrote just above you. I have been trying to get back to work part time and I was looking into adult day care facilities. Vinny and I went to visit one and when we left he had tears in his eyes and said "I don't like this place". I can't imagine leaving him there, not even for any hour. Most of the adults are much older than him and he is obviously aware of what is going on--- at times. I have been fortunate that a friend is staying with him while I work, they go to Duncan Donuts together... take rides, go to Home Depot, things like thatl... but you are right, he needs a tremendous amount of one on one care. Vinny also will not eat anything high caloric - except ice cream - and even that in great moderation. He is loosing weight, but I think it is muscle loss also. I wonder if your patient and my Vinny's stomachs bother them after they eat. Vinny has a bathroom fetish - or problem.. he is constantly going to the bathroom... and it is not a medical issue, we had prostate done last year. When Vinny is trying to tell me something, few of the words are correct, and I too go through a list of possibilities. Sometimes I get it... other times he is very frustrated and gives up. And I think that makes him think twice about trying to communicate the next time.... I am sorry you are suffering watching your woman go through this. Her daughters should be ashamed of themselves. Thank you for your kind service to this woman. I know someday I will probably have to place Vinny somewhere and he will be lucky if he gets a caregiver as sensitive as you.....

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  31. we started sending my dad to an adult day care center about four years ago. they had a group two days a week of just men and it was called "the Eagle's club." they'd go on field trips or do different activities together.

    it helped that they had a specific "program" that we could send dad to. he looked forward to it (as much as someone Can look forward to something when their memory doesn't work so well). he didn't think of it as a day care center because in his mind he wasn't going for day care, he was going to hang out with the other guys in the group/club.

    you might try looking for something like that. it gives you a break while the person with dementia hopefully doesn't feel left behind, but rather they have something to look forward to.

    my dad doesn't really have any clue what goes on in the group anymore, but his attitude toward going is still positive. (whereas he'll sometimes fight going to my sister's house. he realizes that he'll be away from my mom then. but he doesn't mind it when he's with the group.)

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  32. wow. some of this is overwhelming. sorry if my earlier gaiety seemed rude. i can see where the humorous outbursts are no longer funny anymore, kind of like losing patience with a small child that keeps asking 200 questions in a row, or throwing an embarrassing temper tantrum in the middle of walmart. sad that there is no better research for this type of dementia

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  33. it's overwhelming sad. but the best way to deal with it is to see the humor in it. :-)

    that said, i think i've found myself closer to tears more often in the past year than in all the years previous to this one. i think it's partly because he's more dangerous to himself now and i still worry for him even when he's being an annoying turd.

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  34. Hi Meg! My name is Kim. I live in Cincinnati, Ohio. I'm 38 years old and my father has Picks as well. I can't tell you how many things you've mentioned about your father that match my dad so perfectly. My dad is still mobile and communicates pretty well. He repeats questions over and over again and is obsessed with walking and daily routines. He has lost all empathy for others and is very self-focused. He lost his driving privileges this year after it took three police officers to pull him over and then "keep" him pulled over. He wasn't hostile or belligerent with them, he just didn't think he did anything wrong and didn't see any need to pull over or stay pulled over. Mom and I had to go "spring" him out of jail. It was a horrible experience. But, that experience led us to having him hospitalized so we could get a diagnosis for him. You see, he thinks the medical professionals are out to "do you in." So seeing a doctor or staying in a hospital is out of the question as far as he is concerned. I could really relate when you talked about people asking how your dad is doing and you said the better question is how is my mom doing. My dad is also completely oblivious to his condition and completely happy and content. It's my poor mom that struggles daily to keep up with his wants and needs. Thanks for sharing about your father. It helps so much to know others are going through the same kind of struggle.

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  35. i am 24 years old and my mom was dignosed with picks disease 1 year ago. she is now 51 years. it so uncommon that only 1 other person in my city has had this that the doctors no of. whats the chances
    its a sad disease to watch your mother have

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  36. My husband is 57 yrs old and starting his 5th year with the diagnosis of Pick's Disease. I have left my job to be his caregiver and this disease is pretty overwhelming. God Bless all the families dealing with this, I know what a struggle it is. I hope I can join in the support group often.........

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  37. Is this site up & running? Most of the entries are fairly old. Hopefully we can get it up & going.

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  38. hi lois,

    yes, this site is up and running, but it's also my personal site. (you'll find lots of stuff on here about stuff other than picks.)

    there is a dementia group here on multiply, though. here's a link.

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  39. same here. and that guy died of cancer.

    my mom has hoped beyond hope that the same thing will happen to my dad, but he's fit as a fiddle otherwise.

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  40. Hi Meg! It's Kim from Cincinnati. I was wondering if you would mind describing your dad's sleep habits? My dad's had two nights in a row of getting up at 3:00am and wanting to get ready for the day. I'm wondering if we are entering a new stage. Also, he's entered a phase in which everything is very funny to him, like a horrible car accident on the news where someone died. Also, in public this week, he mocked a woman who was laughing very hard and her husband didn't appreciate it a bit. My mom didn't explain, she just moved him on very quickly.

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  41. hey kim, sorry it took me so long to get back to you. i emailed my mom to ask her, since i don't really have a clue. then i forgot which post you had asked in. :-)

    here's mom's response:

    "Everyone with Picks is so different but he is not unusual. [I think she's referring to your dad. I had copied your post and emailed that to her.] Dad is up a lot at night but not up for the day (tell her to look into risperdal or serequel) and he never laughs at anything. But I have heard of others who are rude and crude. Dad says things like _ she sure is pudgy- with no thought to the person he says it in front of."

    while i'm talking about my dad, today it dawned on me that my dad no longer realizes that if the front door is locked that he could go out the back door and around to the front.

    he keeps wanting to go out for a walk and in the past he'd pace back and forth between the front and back doors. the lock i have to use on the back door (which is a sliding door) won't allow me to lock the door after leaving that way, so i have to go out the front door to get the kids from school if i'm going to try to escape from the house. but dad will grab the door while i'm trying to lock him in and shake the handle until he destroys the lock.

    but today i tested not locking the back door and he stayed in the house while i was gone!!!! he never even walked back there to check the door.

    so his reasoning skills have taken another step down, i suppose.

    i've also found that playing relaxing music (i'm playing some shawn colvin right now.) helps. he seems more likely to settle himself down in a chair and not ask me quite as often when mom is coming to pick him up.

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  42. Hi Meg. Just found your page by surfing many many web pages for Picks Disease. Seems I'm quite obsessed lately. My mom was diagnosed with Frontal Lobe Dementia about 3 years ago. I lived in a 2 family house with her and dealt with the progression of it for 2 years. Very difficult. Never knew what to expect when I came home from work or what my family would tell me when they got home. My mom was 70 when the symptoms started becoming very noticeable. She was planning on retiring in May of 2003, and she did, but in March of 2003 on her way home from work she was hit by another car. After this accident is when we started noticing big changes in her. It took us 10 months to convince her that she needed to see a doctor. She was diagnosed with Frontal Lobe dementia at that time. Last August 2005, we moved her into an assisted living. She was in the regular resident unit for 6 months and then they advised us it was for her safety that she be moved into the dementia unit. That's where she is now. I just came back from seeing her last week, as she is now in GA near my sister, since the cost for asst. living is much less money than up here in NY. I try to get down there every few months to see her. This time after while being there, her doctor mentioned Picks Disease, which I had heard of and already was reading up on. I am aware of all the symptoms, she could be a case study, it's so uncanny how this disease is so alike in the people who have it. My sister and I are very close and we were very close to my mom. When I saw her just last week I was not shocked at how much she has deteriorated, but I was broken hearted to see her how she is now. So many stories to tell and feelings and emotions to share, I know I could write a book and one day when I'm not so drained from it all, I will get it all down on paper. I try to keep a journal, but it's daunting to put everything down every day of what I feel and how I feel and what she is going through. The choking episodes, the emergency room visits, the incontinence, and all the 100 of others symptoms of this god forsaken disease. It's a great support though to know that there are others out there going through the same emotions. My mom is widowed, my dad died 16 years ago, she remarried and then got divorced about 10 years ago to her 2nd husband. All she has is my sister and me and we are doing all we can for her to take care of her and keep her comfortable. It is amazing how many people have fallen out of the big picture. Certain friends don't call anymore, certain family members don't call. It's upsetting, but I'm at the point that it doesn't matter anymore. As long and my sister and I keep doing what we are doing for her is all that matters. Please keep in touch, and I will too. Thanks Meg for starting this blog page.
    Debbie

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  43. Hi Dafdeb. I am not Meg but I read your note and I do feel for you. I realize it must be hard to try to deal with things being so far away. My husband of 37 yrs is in his 5th year of this horrible disease. Some days I am not sure I can handle more. Everyone keeps telling me that God will not give me more than I can handle but there are days I question that. I hope you and your sister remain close because you will need each others support. My son has moved in with us, he is 36 yrs old and single. He is an amazing help for me. Altho he continues to maintin his job, he gives me respite time and helps all he can. I just have to remember at times that he hurts also and that he still has a life to live. Our friends have deserted us just like your mother's have. I tell myself that they don't want to see it but they must realize that I need support to. Like you said, as long as we continue to give the best care possible, that is all that matters. I am new at this group and I hope we can all help each other if needed, even if it is just a chit chat online. I know what you are going through and I feel sorry for all families that have to deal with this. I worry so much about my son in the future and I know he thinks of it too. Just a sad situation that there is no help out there. We have been to doctors that had no idea of Pick's disease. Remember to take care of yourself too. Hope to hear from you.

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  44. Hi Daphne, I have a mother, 59, that has been diagnosed with picks. She calls me between 10 to over 100 times a day crying and cursing about how tired she is of feeling this way. She has been through so much. It will take the life out of you to watch and care for someone day in and day out with this disease. She is always terrified, lonely no matter who is around. She cries and says she is loosing her mind with a blank but terrified look. I wonder if her daughters just got to the point where it hurt to much to see their mom in that condition

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  45. Hi, my mother just passed away last week. She was diagnosed with pick's in november 2003. Her disease progressed rapidly, you could see her decline weekly. An autopsy confirmed that it was definitely pick's. My father and I were her primary caregivers up until we placed her in a nursing home on January of this year. My mom was unable to speak for the last year and a half, although she was able to walk up until the end. Her autopsy showed her brain deterioration to be so bad that her cause of death was that her brain did not tell her heart to beat and her heart just stopped. We are also having genetic testing done as well so we will know if it can be passed on. Anyone dealing with a loved one who has pick's disease, have patients and give them plenty of love. For us this disease progress so fast, my mother was diagnosed at the age of 66 and died at the age of 71.

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  46. So sorry to hear about your Mom Suzej. My Vinny (see May of 06) is deteriorating rather quickly also. He can hardly speak. He can't even get the DVD discs back into the correct case. But he is quite mobile so we are out every day for a bit and then he is happy in front of the TV. I am fortunate that where we live we have a respite group. They come everymorning for about an hour so I can get out and walk by dog and have at least that time to myself. I am thinking now of having someone come live with us, like for room and board in return for respite care. I am going to my first support group meeting on Monday. I appreciate your sharing the details of you mother's passing. For me, having some idea of what I might expect seems to help, even though I know everyone is different. We got a diagnosis from Univ of Fla and Mayo Clinic in May of 06. Now, almost one year later the changes are significant. I am glad to be the one to care for him, I love him so much. Balancing my care and his is becoming an issue just now. With all of the support that is out there, I am hoping I will be able to do this as well as all of the wonderful caregivers above. Meg, how are you doing??

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  47. pick's disease is something I had never heard of up until my mom's diagnosis. It is so nice to read everything and hear from people who are going through the same thing as we did. People would see my mom and they would not realize she was sick because she still look healthy and normal. We were in walmart one day and my mom was walking behind me, she had opened a bag of cookies and was eating them, then she put them back on the shelf, an employee of the store came up and asked if we were planning on paying for the cookies. I explained the situation to him, all the while my mom stood by me and laughed at everything the man said. At the time I was really upset, now I look back and can laugh too. At the time all I thought was my mom was a well groom, well respected business owner who would have never have done anything like this. I really wish I would have found this site while we were talking care of my mom. It really would have helped to talk to others going through the same thing.

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  48. Sorry you did not find this sooner. I often have people angry with us because Vinny doesn't seem to be aware of the fact that two people cannot share the same space. So people think he is rude bumping into them or cutting them off (especially with grocery cart), I am learning to walk in front of him, but have to watch my heals!! Now as soon as someone starts to reprimand him, I just say "he is not well", or make a motion that he is deaf, or something like that. People immediately understand. for this I am grateful. I really try and treasure the parts of him that remain with us. I don't dwell on the fact that this was a Senior VP of an international Building firm.... intelligent, A type, race car driver too!! We dance, sing, hug alot and silly things make him laugh too. This gives me great pleasure. Thank god for that.

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  49. sue, if vinny is willing to wear a name tag, that helps a lot too. my dad has been picked up by the police several times. in the beginning they'd ask for his license and he'd start to get rude with them. my mom finally wrote a note on a sticker and put that on his drivers license.

    but then he started taking walks and getting lost so she put a name tag (with phone numbers, address and other info on it) on him. the unexpected side benefit to that is that now the police immediately begin treating him with gentleness and respect when they find him, rather than getting the cuffs out and planning on taking him down to the police station. and people in general in stores and restaurants are either more understanding, or so busy trying to read what's on the card that they don't notice if he does something that's rude.

    hmmm, i should probably repost this suggestion in the dementia support group, eh? :-)

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  50. thanks, great tip!! I'll let you know if he will wear it. (Maybe I'll put it on his back!!)

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  51. Hi Suzej. My husband also has Pick's and is in his 5th year of diagnosis. I think it is great that you plan to have genetic testing but I would like to remind you to be careful with it. Remember, once you have results of the testing, if it is bad news, then you are no longer able to obtain more insurance. Before you plan for the testing, make sure your insurance has all been taken care of. You might consider a long term care insurance before testing. Nowadays, even if you are changing jobs, sometimes they will not cover you for a pre-existing condition. Just a heads up and something to think about. Genetic testing can be a good thing but make sure you really want to know the results. Good luck and the best of good health to you.....lois (azfisher)

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  52. i didn't realize there was a genetic test for something like picks disease. is there a web site with info. on that, do you know?

    and thanks for the reminder/tip azfisher. my mom was really glad that my dad was still working when he was diagnosed. it meant that he was able to go on disability. i don't think she remained with the insurance from that job (since my dad was in the military, they cover him), but all of this financial stuff really needs to be sorted out Before you even know for sure that something has been diagnosed. seems silly but that's how it goes.

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  53. I am not sure about a website for genetic testing. My mom was actually in a study with a new drug when she was first diagnosed. I have a brother who is the CEO of a large hospital, this has opened alot of doors for us when it came to her treatment and now further testing, with hopes that it may someday help others. It was not easy decision to allow all of this testing after life, but in my heart I know that my mother would want to do anything she could to help others. I know that things were sent to places in california, wisconsin and england for further testing. Every single person who has a loved one with this terrible disease, my thoughts and prayers are with you. It took my mom from me mentally right before my eyes. I am not sure that I want to know the final results of the testing. They said they will be able to tell if she had the hereditary marker or not. If she did than her children do have a 50% chance of getting it. I have told my brothers I do not want to know either way at this time, maybe I will change my mind in the future.

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  54. yes there is genetic testing. My husbands was offered by Mayo Clinic in Arizona. If you are interested, check with your doctor but make sure you are mentally prepared for it. My husband's siblings and my son chose not to have the testing. It is a major step and a huge decision. Good luck.....lois (az fisher)

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  55. Hello ladies. Me again....Suzej..it is nice you were able to doors opened for you by your brother.....we need all the help we can get. My husband was going to be in a Pick's study at Mayo but they decided he was to advance in the disease to help them. I was heartbroken cause I know that is something he would love to do. I know also he would want to do all he could to help research of Pick's. You are right Meg, all financial items should be taken care of ASAP.....there is so much to deal with. I know this is your personal site meg but I wanted to butt in with the insurance reminder.....good luck ladies & nice chatting with you......lois (azfisher)

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  56. not a problem. :-)

    you might want to post the info. on insurance in the dementia group as well. it's a good reminder and may be really helpful to someone who's relative was just recently diagnosed.

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  57. Hi, my Dad is 66 and was diagnosed 2 years ago. I have struggled with the loss of my Dad as I knew him.... strong, caring, loving, always there for me. I think I am still to this day grieving for him and cannot bear to see him asking the same thing again and again and again. He lives in the South East of England but today has been saying all day 'lets go to the Beach near Sunderland its only 6 miles away', when actually its 5 hours away. I have tried to entertain him by going out on 3 visits today but boy has it been a struggle with my 2 year old and 5 year old. When 1 of them needs the bathroom it is like a military operation! My daughter, 5 1/2, has been upset today to see her beloved grandad like this. Like many of the other postings my Dad is physically very strong and fit, although he is putting on weight, I believe gluttony is a problem. Unfortunately, he is not lucky enough to have a wife who loves him, my mother from day one of diagnosis has seen him as a terrible burden to her. She will not accept any care agencies getting involved. I do my bit, which i wish could be more, but with 2 little ones, 2 jobs and living a couple of hours away i find it difficult. This leads to guilt and sadness on my behalf. How long does it take to accept this has happened to your parent and that you won't see them grow old gracefully? My Dad was always so smart mentally and also with his appearance. Now if you don't get his clothes out every morning, he would happily wear dirty, soiled, torn clothes day in day out. My one saving grace that I am so grateful for is that my Dad doesn;t worry about Picks, he thinks it's funny, he carries a card in his wallet that tells people about his brain disease. It causes endless giggles from him. So I am glad that he is not suffering by knowing what he has, what he does and what is coming.

    Barefoot Meg - thank you for setting up this site! I have searched and searched for the last 2 years for help and information! Your videos and blogs are heart wrenching, honest and give hope that I will one day get to accept this.

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  58. Barefoot Meg - I realize this is your personal site but could you advise how I can get onto the site to chit chat with others like we are doing here. I am not computer savy so your help is appreciated. I would love to talk to others like this. Thanks. azfisher

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  59. Hi Kirsten: Glad you found this website. It definitely helps. So sorry to hear about your Dad. I recently joined a support group, Alzheimers, actually, that is for all types of dementias. Being with other caregivers and hearing how they handle things that I am going through really really helps. You sure have your hands full and not too much help it sounds like. Most important, don't beat yourself up. You are doing you best and this is all anyone can expect. I try to NOT remember how my Vinny used to be. I see him now and cherish what is left. He is happy most times, and when he is not I can easily make him laugh with silly ideas. He is on a triple dose of Zoloft right now. It is really helping manage his compulsiveness, which takes alot of stress off me. I'm sure you will get good thoughts from others as they read your note. Take care of yourself 1st, all else second. My thoughts and prayers are with you.

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  60. I'm glad you've joined us, Kirsten. I don't think you ever really get used to what's happening to your loved one. I try to see the humorous side to what we're all going through with my dad. But every once in awhile it hits me like a ton of bricks what we're missing out on -- the loving, fun, intelligent man my dad used to be.

    Lois, if you'd like to chit chat with people about dementia, then I'd recommend the Dementia Support group here on Multiply. (I think I've invited you already, Lois. I don't remember if you've accepted or not. I'll go check and if not I'll see if I can resend. -- Kirsten, I'll send you an invite tonight.) I'd really like to see more discussion going on there. If you want more help in terms of actually making posts there, I can help with that too.

    (Short version: click on the word "post" at the top of the page. the first line of icons is to post on your personal multiply site. look below that and you should see a link to the dementia support group. click on that. then click one of the icons that appear - probably either notes or blog - and make your post.) :-)

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  61. I just went and checked the invite list over in the Dementia Support group. Sue, it looks like I've sent you an invite and you haven't accepted it yet. If you want, you can just click on the Dementia Support link and you'll see an option to join the group in the right hand column. Kirsten, I just sent you an invite. And Lois, I didn't see you over there at all, even in an invite form. So I'll send you another invite.

    :-)

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  62. Thanks Meg, I must have overlooked the invitation. I will definitely sign up.. Thanks alot Meg. We all really appreciate all you are doing to help us.

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  63. Hi Meg. Sorry I haven't responding - things have been hectic here the past few days. I do want to join the support group and will get signed on soon. Thanks for your help! Look forward to chatting with you.

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  64. Hi Meg. I did get signed on to the group support and I thank you for your help with this. I am pretty basic on the computer so I hope I got it right. I hope things are going well for you and I hope you have a wonderful summer. Already triple digits here in the South West and that will mean, a long hot summer. Take care of yourself.

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  65. I was just thinking about Meg and this today. I passed by a rehab center today while driving here and there, and I remembered Meg. I felt bad for her. Life can be cruel at times.

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  66. Don't feel bad for me. Feel bad for my mom. My dad was up all night fussing around the house. She only got 4 hours of sleep. She's probably a big grump today. :-P

    Looks like you made it to the group just fine, AZ. :-)

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  67. Is there any kind of help out there for those who care for those who have this disease? I have 4 children and a husband and took care of my father after he had been diagnoised with this illness..now I am having to care for my brother who is only 45. We just moved to Georgia and I am looking to get any kind of assistance. He makes me very tired and we fight a lot. I just need to get some help and have no ideal where to start..

    Thank you in advance for your support,

    Christy

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  68. hi christy. there is a support group here on multiply. i'll send you an invite.
    i think my mom's greatest support system has been having myself and my sister in town. we give her breaks when she's at wit's end. my dad also goes to an adult day care center twice a week. that's a HUGE support for my mom.

    i'd recommend checking with local nursing home systems and see if they have any recommendations for adult day care. they can also put you in touch with your local alzheimers caregivers support group. (i have yet to see a picks disease support group. but at least they have an idea of what you're going through... sorta.)

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  69. Hi Meg,
    I am the Education Coordinator for an Alzheimer Society out of Sarnia, On Canada and came upon your site when looking for information on Pick's. I think you have done a fantastic job on the site and I can see you have already helped a number of people. Your responses are well thought out and understanding that everyone's situation is unique.
    Have you read or heard of a book called "The Banana Lady" by Dr. Kertesz? He is an expert on Pick's disease out of London, On.

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  70. no, i haven't. i'll have to look that up. I assume it's about Picks in particular?

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  71. I would be interested in this book. Does it pertain to Pick's Disease? That is a strange name for it. I did read a book called "Losing LuAnn" and found it to be very comforting.

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  72. The book is about Pick's but describes a variety of case studies. Here is the link to read about it from the publisher http://www.trafford.com/06-1883. The book does have an interesting title it is called the Banana Lady because of one of the case studies describes a lady who is obsessed with eating bananas which apparently is not an unusual trait (as well as craving for sweets in some cases oatmeal raisin cookies according Dr. Kertesz).
    In London Ontario (not far from here) there is a Pick's support group.

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  73. lol! my dad went through a phase where he ate about 5 bananas a day. he probably would have eaten more but my mom couldn't buy them fast enough.

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  74. Wow, I hope and pray they can find a cure, and I'll shout up extra prayers for your mom, you, and the rest of the family for the strength to help hold you all together.
    I can only begin to imagine how difficult this is to work through.

    My Grandmother suffered a short time with Alzheimer's before she died,
    and my Mother was her general care taker, from her stories about dealing
    with that I have a little idea but to understand how anyone can deal with something
    like that for such a long term is quite beyond the grasp of normal thought.

    Again I hope and pray for that day he can be helped and for all of you there
    helping him through this.

    Peace Within to you one and all,
    Stephen.

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  75. I just came across your site. I started reading all of the threads but had to stop because it is so painful to take in the degeneration in PIcks patients My partner's mother has dementia and her doctor seems reluctant to investigate it enough so we can put a name to her particular form of dementia but after viewing this site and several medical sites on Picks, I am fairly certain that it is PIcks. Can anyone tell me how the diagnosis was made for their family member?

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  76. the problem with diagnosing picks is that most doctors don't have a clue what it is. they've heard of it, but that's about it.

    they did memory tests on my dad and he passed with flying colors. but he was doing socially inappropriate stuff regularly, wasn't able to work (he was a professor and the students rated him rather poorly that year, surprise, surprise.), and wasn't getting along with my mom. (she'd say something about pants and he'd say, "no, there's just one (meaning one pair of pants. but he was insisting the s didn't belong at the end of pant because of that).)

    i would highly recommend that you buy a copy of the banana lady by andrew kertesz. once you're done reading it, hand it to the doctor. or better yet, find another doctor who knows more about picks and give both old and new doctor a copy of the book.

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  77. hi all, sure has been a long time...

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  78. that one got away from me.
    Heidimary: My husband Vinny was diagnosed as follows:
    in April of 04 an MRI said "dementia" probable Alzheimers.
    In September of 05 a second MRI and Pet Scan showed frontal and temporal lobe atrophy - probable Picks dementia.
    In December 05 he had a full neuropsychological exam which eliminated the Primary Progressive Aphasia (semantic dementia) and resulted in "Probable Picks Dementia:
    In March of 06 we went to Univ of Fla Mind Institute in Gainesville, FL. Spent 5 hours with 8 doctors who reviewed all prior tests and images and did comprehensive mental testing also... now we heard "Fronto Temporal Dementia" for the first time.
    In March of 07, after eliminating every other possibility we got a definitive "fronto temporal dementia" diagnosis. I joined the FTDsupport.com group and after collaborating with the caregivers there, I have come to accept this diagnosis. Picks is a sub-type of FTD. The testing is imperative for the right treatments. Unfortunately only a brain autoposy will confirm it a 100% and, of course, this is after death.

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  79. the banana lady guy talked about this and said that it's not entirely true. only a brain autopsy will find if there's picks particles in the brain. but he listed several clear symptoms that when seen together pretty definitively indicate picks disease. (he also thinks picks disease is the umbrella name that includes several variants, one of which would be what's often called FTD.)

    i think my dad also had an MRI that showed brain atrophy. that was what finally convinced the docs that my dad wasn't find and my mom wasn't a nut case trying to find a reason to explain their marital problems.

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  80. Thanks to all of you for the information. Meg, I will get a hold of that book. We need all the insight we can get. Sue, thanks for the detail. We will show your response to her doctor. One of the things that is confounding us, is that she is very lucid at times and at other times, her behaviour is very off ( lack of memory, belligerent, etc.). Thanks again to all.

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  81. if you go to www.ftd-picks.org you will be on the Association of Fronto Temporal Dementias website.

    This is the definition I found there:

    Subtypes of FTD

    The term “FTD” currently comprises the following list of specific disorders. A more detailed description of each may be found by clicking on the individual disorder

    Pick’s Disease
    Corticobasal Degeneration
    Progressive Aphasia
    Semantic Dementia
    FTDP-17
    Related Disorders
    FTD/MND (FTD with Motor Neuron Disease). This is also known as ALS [amyotrophic lateral sclerosis or Lou Gehrig’s disease] with Dementia.

    doesn't really matter too much, FTD/Picks--- they are all terminal and all have different behavior presentations and alot the same too,

    What worries me is the amount of mis-information that DOCTORS give. We hear what they say like it is coming from a Bible, and often FTD is not their expertise.

    There is a great support group at http://ftdsupportforum.com/ and another website at www.ftdsupport.com. On these sites you can get LOTS of info about all of these dementias and chat with other caregivers who are going down similar road.

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  82. the first support group i saw was in the u.k. they talked about getting a brain autopsy but they also talked about genetic testing. i can't find anyone here in little rock to even see my dad. i had a psychiatrist's nurse tell me "we don't take that disease" unreal. my dad won't eat anything today and i think he is starting to aspirate the water i try to get him to drink. he will be 84 may 6th and i just wish he could die before this gets worse.

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  83. we've had a much harder time getting my dad to eat lately. he's too agitated and won't sit still long enough. but he ate plenty the other day when i had chocolate chip cookies cooling on the dining room table. lol!

    i can't remember if you got your dad in a home or not. do you have a "do not resuscitate" order with them? (my mom gave my sister and i each one. that way if something happens on our watch, we can pull it out.)

    if your dad is already at that point, it probably won't be that much longer. and then you'll be able to start remembering your dad as he used to be again. it's so hard to do that when their new (dementia-ed) self is right in front of you.

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  84. my dad thinks we live in crosby, north dakota. he has not lived there since about 1943. he asks me everyday about the folks in crosby. the most heartbreaking moments are when he asks for olaf and sarah-his parents-dead since 1958. what is also odd is that when he talks to his friends from crosby he remembers them so much better than he does his six children. he divorced his wife(evil woman) last year but does not remember being married to her and says "olaf married some slut and now none of his friends will speak to him". dad's friends did dump him. yesterday in a lucid moment i told him he had pick's and he said"i learned about that when i was in my medical training but i don't know much about it. i am scared for my kids tho". i think that he has heard my sisters and i talk about contacting kevorkian if we get this. my dad used to be a real softy but i have only seen him cry one time in the 15 months i've been caring for him. and then he said"i think he's crying". he also in public will make fun of people who are fat. totally insensitive. he introduced my husband as "this is danny-he is rather large", danny was furious then but now he thinks it is so funny. dad love babies now. if we are out and he sees a child he will fixate on that baby. he was not fond of children when we were young. the thing that is hardest is that he is the undad. he is dad but not.

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  85. yeah, i would describe it as "an alien has taken over his body and is trying to figure out how earth works. he keeps fixating on a few things he found in my dad's brain without realizing that that's inappropriate. but every once in awhile he pulls out one of my dad's old quirks and reminds me of the mind that used to be in there."

    my dad is so far gone now, though, that i wouldn't say that applies. my dad has never had a lucid moment. since about a year before diagnosis i'd say the disease was running his brain. we've never felt like there was a time when dad was able to break through and be himself again, even for a moment. in some ways this is sad, when we hear about other people getting these windows back into their parent's selves. but on the other hand, dad never has a moment when he realizes something is wrong with him either. in that way it's a real blessing.

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  86. My mom has Pick's, diagnosed April '09 at the age of 56. She had been acting very strangely for a couple of years, and oddly enough the summer of '08 that her friends and sisters were contacting me and my sisters in concern for her. Of course looking back, we can see many red flags. She enjoys sweets and cookies (oatmeal raisin - I will have to get The Banana Lady - tomorrow!!), she has short lived moments where we can see parts of the real Mom, but then is followed up with something that brings us right back to reality. My dad is the primary caregiver, he is a farmer and has never been responsible for caring for anyone. He is doing much better than I would have ever dreamed. We are from a small, close knit community where all the women belong to the chutch group, the men belong to Lions, there are monthly potlucks, everyone knows everyones family past to their great great grand parents, etc. I am shocked at the community's reaction; they are very nice when mom is around, but there are about 2 good friends of hers that actually stop over for coffee, or pick her up to go golfing or shopping. Mom can't legally drive anymore, but she helps dad move the vehicles around from field to field or drives herself into church. It's funny because mom gets upset talking abt dad because she says "He doesn't let me drive anymore. I don't know, he just doesn't" shrugging her shoulders. She still lights up with the grandkids, and has said to dad, during one her trips back to old Mom, that she is nervous that the grandkids won't know who she is. The oldest is 10yrs and youngest 9 mons. She can't tolerate too much noise, or busyness. When she has even a half a glass of wine or drink, it seems she has had a bottle - her speech is slurred, conversations are more erratic. Dad has taught us that she is much better when she is fully rested. She gets really run down when all 3 of us are home at the farm, with our kids (6 grandkids so far) trying to keep up with conversations, where everyone is going and doing - having naps, making lunch, moving grain, cutting the grass, hauling water. So we have learned to just slow down, and especially after supper to keep it low key. She has trouble dialing the phone, even with the phone number in front of her and saying the numbers out loud. She seems to be doing pretty good, my sister has met a couple of ladies in the city where she lives who have lost their husbands to Pick's in the last few years. They both have told her that things may seem to be going fine for a while, you might even start to think the person is getting better, then they wake up one morning, changed again.
    I have enjoyed reading everyone's stories, comments, tips, etc. As much as my friends are great at letting me talk abt my mom, they just don't get it - how it makes you feel to know how badly she wanted to be a grandma and to help her daughters to be great moms, and wives. When I want to get her recipe for the best carrot cake, and she gives me a recipe for morning glory muffins. Anyways, I could go on, and on abt what she used to do compared with her drastic inability now, just as I'm sure you all can, but it will just make more tears fall! Thank you for this website, and for all you have helped me with already! I hope my story is somewhat easy to follow, there is just so much I could share, and where to start . . . .

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  87. It sounds like your mom's friends are helping to keep her busy so your dad doesn't have to worry about her. That's great. My dad attended a Bible study for awhile and even though he could hardly follow along, the guy kept encouraging him to come because he knew it was such a relief to my mom to have him gone during that time. They both have told her that things may seem to be going fine for a while, you might even start to think the person is getting better, then they wake up one morning, changed again.that's true. in the beginning each change seems to be for the worse. but after awhile you'll get to the point where the changes are making things a little easier. for example, my dad has stopped talking and just wanders in circles through the house. on the one hand he's much worse off. but on the other hand, he's no longer driving my mom absolutely batty asking the same questions over and over again. every once in awhile one of us will say, "do you remember when dad used to _____?" and we'll all go, "oh, yeah. i'd almost forgotten about that. but at the time i thought it would never end."

    it's a very sad disease. your loved one is gone before you realize they're leaving. you're left with an infant who isn't very fun to hang out with. but at least it keeps progressing and the rough stages don't last forever.

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  88. hi when my mom turned 60 she was complainin of tirednessand & dizzy spells her GP diagnosed her with vertigo she was put on tabs 4 it but they didnt work then she was complainin wit noises in her ears her GP diagnosed her wit tinnis in the ears and told her there was nothin she could giv her 4 it and that she'd hav 2 deal wit it. 6 months later my mom got very down in her self sayin she felt there was nothin in her head dat her brain didnt feel like it was workin rite and she would say she felt some of her brain was missin we her sibling would laugh at her and tell her 2 stop carryin on. Then there was days we would go visit her at about 2 in the day and she wouldnt even b up out of bed yet she just say she was tired dis went on 4 a couple of months shed b in bed all day there b no house work done or dad's dinner wouldnt b done then we noticed she wasnt washing her self which really wasnt like her so we called her GP and she came out 2 the house 2 c her she told her 2 get her self together and stop carryin on dat it was just lazyness wit her the GP den spoke 2 us and told us she would get depressed if she carried on like dis but we knew there had 2 b more 2 it cos mom was always active and loved havin us visit wit our children. Then 1 mornin dad rang us 2 say mam went 2 the local shop at all hrs in the morn 2 buy a pack of smokes but he siad wen he came down the stairs she was naked and 2 this day we dont no weather she went the local shop naked or not. all this went on for a yr and comin up 2 her 61 birthday dad rang and asked us all up 2 the house wen we got there mam was throwin things around the house and screamin help me help me whats wrong wit me Dad said she hadnt slept in 5 days so he called her GP agian this time the GP's husband came he's also a doctor he recomended he send mom down 2 the local physriatra hospital he felt she was havin a nervous breakdown. Mam is 62 now and is still in the hospital and its thanks 2 dis hospital dat we discovered wot was really wrong wit mom the hospital done all test on her ie brian scan mri scan cat scan while doing these the noticed that the right side of mom's brain is shrinkin apparently every one's brian shrinks but mom's is shrinkin 2 quick 4 her age she was diagnosed with FTD but reading the stories on this site i really thin she has Picks which is very like FTD. I hav 2 brothers and 4 sisters so we take turns on takin mom home every day 4 a couple of hours and keep her over nite on the weekends we are livin in dublin in Ireland and so far he have no help here if any 1 out there knows of any 1 else in ireland wit FTD or Picks plz contact me by e mail joannedillon1@hotmail.com the reason i ask this is because the hospital she is in doesnt have the staff 2 help my mother and want 2 send her 2 nursin homes very far away from were we live plus my dad thinks if she goes in 2 a nursin home she wont get the care she needs as she is gettin worse every day. Mom symtoms at the moment are obsessed with going 2 the toilet about a million and she says it out load I WANT TO DO MY SHITE she still mobile on her feet but can b very shakey so needs help going 2 and from the toilet, gettin in 2 bed, gettin dressed, bathin and eatin she doesnt like 2 go any where so she just goes from the hospital 2 home and back 2 the hospital. I hope who ever read this can understand it as i'm not the best at writing or typing

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  89. hi joanne. my dad had tinnitus too! i wonder if that's part of the disease. he used to complain about it a lot about 10 years ago, which was about the same time that he was diagnosed. he also got a lot of headaches.

    is there a nursing home that's closer that you could send your mom to? have you read the banana lady book? i would highly recommend it. there are some examples in there of people with picks that sound a lot like your mom. i wrote a review about the book: http://barefootmeg.multiply.com/reviews/item/22 you could also get a copy for your doctor if they haven't read it. it's written by a doctor with both doctors and families in mind.

    my mom still watches over my dad at home. the hardest point was about 5 years ago when he kept escaping from the house and he'd go to look for coins in parking lots. people called the police on him constantly because it freaked them out that someone was walking in circles around their cars. they thought he was trying to break in. he was even accused of stealing a laptop out of someone's trunk once. but all he ever came home with was spare change that he'd found. he used to take tips off of the tables in restaurants, too. it was really hard on my mom.

    but as he's degenerated he's actually become easier to take care of. he just walks in circles around the house. he can't talk any more. so he's really just a presence that passes through the house. it's much easier than the days when he talked non-stop asking questions and then not waiting for the answer.

    i'd recommend getting the banana lady book and reading through the case studies. it helps to know that there are other people out there with the same symptoms and it will help you when you talk to the doctors about what's going on.

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  90. I have a close friend whose husband has been diagnosed with Picks, He was part of a study @ the Mayo clinic as was 8 of his siblings. he has one other brother and sister who have the disease. He watched his mother suffer with the illness also, he will not admit to having the disease and refusing to take part in any conversation about it, they did not release the results to him rather his wife. Leaving it up to her to decide when and if she wanted to tell him.
    Question If you told him how did you tell him? His wife believes this will devastate him.
    He is very funny, and comes up with the wildest things during a conversation.
    I've read about most picks cases become violent, and aggressive. He's a really passionate person, and has never been violent or aggressive. But his brother on the other hand has been very aggressive and hostel towards everyone, he has even hit my friend while playing softball with the bat. he was diagnosed 5 or so years ago. So my question is do they all become violent? His sister has never been violent other than telling people no, or refusing to do what was asked.
    He is still working full time, I also work with him. And see the decline day to day, I feel very awful going to be the tattle tale. But my friend wants it this way, I feel as if in someway I'm being the bad guy.

    I also wanted to thank you for starting this, I think this is a very informative blog.

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  91. no, they don't all become violent. my dad was never violent.

    however... there was a time when he wanted to go for a walk and he still had all his strength so he'd push his way past me. i couldn't stop him. we soon learned that though he wasn't violent, he was still very strong. it made more sense to trick him into doing what we wanted rather than trying to force him or block him in any way. we just weren't strong enough. he never hit us, though.

    i would strongly recommend the banana lady book for your friend. you might even appreciate it as well. it's incredibly interesting, but for someone going through the ordeal of dealing with a loved one, i found it really encouraging. just to know that there are others who understand, who have lived through it, and that there's a doctor out there who understands it all, that meant a lot to me. and we were often amazed at how similar symptoms were -- crazy things like eating bananas and candy, or doing funny motions with the mouth. oddball stuff that you thought couldn't possibly be related to the disease, and yet it is.

    as far as telling the husband... i just don't know that i'd bother. if the work place can find a way to gently "lay him off" or "let him go" or retire him or something that doesn't sound bad. if he looks for work elsewhere, be very honest with the places he's interviewing with. and his wife should encourage him to enjoy his retirement.

    even when my dad found out he had picks, he didn't really seem affected by the knowledge. he would tell people something was wrong with his brain and you would think he was talking about the weather. but, he did seem a bit down at times. i don't know if it's because he knew or because depression is just part of the disease. but telling him won't help things and could make them worse, so i'd avoid it if possible.

    i'm impressed that the clinic only told the wife. i have a friend who's father-in-law died of Alzheimer's and now i think her husband has it as well. i encouraged her to call the doctor and have him run a test without telling the husband. it sounds deceitful, but Alzheimer's patients (and picks, sometimes) are notoriously suspicious (probably in part because their own brain is lying to them at times). and, like you brought up, they can also be aggressive. she didn't want to deceive her husband, though, so she told him of my suspicions, and he became verbally abusive not just toward me but toward several other folks as well. it was a seriously bad scene. people try to do the right thing, but the right thing is different (in my opinion) if someone is ill with dementia. in a lot of ways it's like dealing with a kid. you generally tell a kid what they need to know. but if you have a bunch of chocolate in the pantry, you probably don't tell them that sort of thing. they don't need to know, and the knowledge will likely be more of a problem for them than a help. know what i mean?

    feel free to encourage your friend to read through some of my posts. click on the tag at the bottom of the post for picks disease and you'll see all of my posts on the topic laid out on one page. (well, maybe 2 or 3 pages at this point.)

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  97. Hi, i am so glad i found this page, my mom got diagnosed with picks dementia this year, she is 58 years old. She has been acting weird for a couple of years but we just thought it was her menopause. we were wrong :(. I am so devastated by the news, i dont know how to deal. i love my mom she is my world and to just think that i will have a zombie at some point just brakes my heart. My dad is doing worse, that is his world, my brother is in denial and the rest of the family doesn't know anything because my dad wants to keep it quiet until he is 100% sure there is nothing else that could be done, i have faith dont get me wrong, but i dont want it to catch me by surprise and one day realize that this is really happening and that my mom is not there anymore. she is in the stage right now where she has trouble with words or trying and short memory. she is still happy and very smiley, i will miss that when its gone. i was thinking recording her now and have some good memories of her for later. My greatest regret is that i haven't had any children yet and she will never get to know them or they her. If i could join your support group, if you still have it, it would be really great. Its comforting to know i am not alone.

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  99. Hi My husband was diagnosed recently with FTD but suspect he has had it for years reading some of the comments. He was treated for depression for three years and I kept saying to the doctor - there is something else wrong. I eventually changed doctors and things progressed from there. An MRI showed shrinking of the brain which at age 62yrs he was too young for that to be happening normally. I kept pushing the doctor until we were sent to a geriatrician who gave all the usual tests for dementia etc which my husband who is very intelligent passed with flying colours. I then wrote this doctor a letter telling her what I had experienced with my husband over the previous few years and that hit it on the head for her. She organised for my husband to have a SPECT test which is a nuclear scan of the brain and that showed all the damage at the front of the brain. I just wish that local doctors would listen to wives/husbands that something else is going on with their partner. I am glad to have found this site because it has helped explain a few other things for me.

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  100. i think that most doctors know very little or nothing at all about picks, so it's not on their radar to look for. now that you've got a diagnosis, if you'd like to educate your original doctor, i'd recommend getting him or her a copy of the book The Banana Lady. (It's written by a doctor for both doctor's and families of victims. So I recommend it for you as well. Even if you already knew most of what he says, it's such a relief to read about it from someone who not only knows what he's talking about but who understands what you're going through.)

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  101. Hi Meg, I bought a copy of The Banana Lady and after reading it, loaned it to my husband's doctor to read and she was so impressed with it that she has ordered two copies for her rooms.

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  102. wow!!!! that's great news. hopefully she'll tell her peers about it as well. the more doctor's know about picks the better.

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  103. Hi Meg, My husband is now complaining of his right hand shaking but I cannot notice it yet so obviously he just feels it on the inside. I know his doctor said he could get symptoms of Parkinsons Disease but thought that it would be obviously shaking. Do you or any of your readers know anything about this.

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  104. we don't have any shaking issues. hopefully someone else has some experience with this. :-\

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  105. Hi Meg, can you give me an update on your dad please. I am sure all your readers would appreciate it. I certainly appreciate all the work you have done and I have learned more from you than the doctors. Keep up the good work.

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  106. I just want you to know that I'm not ignoring you! I did start a new post almost as soon as I saw your request, but I wanted to add a photo and that's been the hang up. :-\ (A photo is worth a thousand words, right? The only problem is that the photo I want to use isn't on this computer and I haven't gotten myself organized enough to sort out where it is on the other one (plus it's spring break and the kids have been home using that computer.))

    I promise I'll post something soon -- hopefully this week. :-}

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  107. I realize most of the posts on this blog are quite old... however, I found this blog because my father just got formally diagnosed with Pick's Disease - through autopsy. He exhibited the exact same symptoms as you describe here. My sister and I decided to do the autopsy to figure out EXACTLY what he had, and this is all the information we were given. He had Pick's Disease with 3R-tau bodies present. Now, we want to know what the likelihood of us coming down with it are. Finding this information has been immensely difficult. Our family does not have a history of dementia, as far as we know. However, there are great holes in our family history, seeing as both his father and his brother died young (45) before the disease presented itself in my father (53). Both his mother (80s) and his sister (60s) have not had any symptoms, though. Anyway, I was just looking to see if you knew any good studies or information sources for this kind of information? I have done an extensive search of the academic literature and have come up relatively empty-handed. Everything I'm reading seems to classify the two forms (sporadic and familial) based on if there is a history or not. Thanks for reading.

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  108. If I remember correctly, the Banana Lady book had a chapter devoted to that topic. I can't remember if it was the book or an article that I read that said there's a family in Italy that can trace Picks back 500 years in their family.

    I can't find much online, that's understandable, that gets into the heredity issue. This article makes it sound like it's a specific mutation of the tau particle - G272V tau - that's the indicator. But they mention 3R in that article, too, and I can't tell how it fits in.

    I'll see if my mom still has her copy of the Banana Lady and I'll see if the information is in there.

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  109. my dad has had picks disease for about 2 years now and he's only 45... it is a heartbreaking disease but fortunately he is obliviously happy and, even though its hard, we try and keep our tears and grief to ourselves. i'm only 19 and i'm afraid my dad wont get the chance to walk me down the aisle or get to hold his first grandchild... he is very healthy and physically fit (as he always has been) and asks everyday if he can go back to work as a police officer. i am planning on getting a tattoo that says "memoriis numquam marcescunt" translating to "memories never fade" because although the disease may take his memory, they'll always be in my heart and i'll cherish them forever.

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  110. Oh, Lauren. That is young. I think my dad's disease started at 50, but we didn't really catch on until a few years later.

    I like the tattoo idea and what stands behind it. My kids have only known grandpapa as being sick. But every once in awhile something will happen and I'll say, "When I was a kid, grandpapa used to____" and it gives them a little window into the fact that he wasn't always this way. I think that's still hard for them to grasp at this point, but I hope the stories I share will come back to them some day and they'll realize him for who he was and not for the man they've grown up knowing.

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  111. Marjorie MetcalfeMarch 18, 2013 at 6:32 AM

    Hi Meg, my husband had a recent PET Scan which showed no FTD or Picks. He had had an MRI a couple of years ago, then a SPECT scan which showed the FTD. He had to give up work because of the diagnosis but now they are saying it is not TFD. Putting the three x-rays together they cannot come up with a diagnosis. They say something is wrong but don't know what. Has anyone else experienced this.

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  112. Hi Marjorie. I'm guessing there must be some symptoms that led your husband to get the scans, etc. in the first place? What's going on? Memory loss? Odd behavior? I think dementia can be diagnosed without having to point to a specific scan of some sort. I'd recommend grabbing a copy of The Banana Lady book, just to see if there's a set of symptoms listed in there that seems to match well. The author covers a few different, but related, illnesses in his book and describes the differences in symptoms between them. That might help.

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  113. Marjorie MetcalfeMarch 18, 2013 at 3:19 PM

    Hi Meg, I did buy a copy of the Banana Lady when you suggested it last year and it was amazing. My husband had a lot of the symptoms even down to the one - looking at his watch all the time - I used to tell him that was rude because if I was with a client they would feel uneasy and think they were holding us up from something. You certainly would not know that was a symptom. He started off being depressed then slowly changed. I thought an alien had taken him over. He had no emotions and could not handle the financial side of things properly. He was a Marine Engineer but now finds it difficult to fix a lot of things in the home or his model trains etc. He perseveres and usually gets it right in the end but only after a lot of frustration and anger. His memory is slowly going but he is so intelligent that when he is tested by the Specialists he gets most of the tests right. Because I live with him. I notice a lot more. The doctors say he is so intelligent he is difficult to diagnose even though they can see by his brain scans something is wrong. We have put our life on hold because of the original diagnosis of Picks Disease but now don't know where we are.

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  114. It sounds like Picks, alright. Has he been on disability?

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    1. Marjorie MetcalfeMarch 19, 2013 at 8:09 PM

      Hi Meg, He was on disability until he received his Superanuation then he lost that. We live in Australia and I don't think the doctors here know much about Picks.

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    2. Ah, that might be how it worked with my dad, too. I should ask my mom. Once he started receiving social security, it's possible the disability stopped.

      I don't have any idea what health care is like in Australia. Do you have a national system?

      My mom had to find a specialist before she was able to get a firm diagnosis. If they can't determine Picks for certain, can they at least determine that it's dementia of some sort? It doesn't have to be a memory loss issue to be considered dementia, I don't think.

      I'm going to suggest that my mom come chime in on this. She might have thoughts.

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