September 18, 2007

Picks Disease - Aphasia and Leaning (to the left)

This past August marked the 6 year anniversary of our move to Colorado to help my mom cope with my dad who has Picks disease.  When we first moved, we assumed that we would be here two years, three at most.  We were told upon diagnosis that my father would most likely only live another 6 years from that point. (He was diagnosed in the spring of 2000. The disaster of Y2K came for us in the form of a disease rather than a coding glitch.)  But the 6th anniversary of his diagnosis has not only come and gone, but physically, my dad's health has remained quite strong.  He continues to be active, walking as much as 5 hours a day.

For several years, friends would ask how my dad was doing.  I'd shrug my shoulders and say, "He's about the same."  It was a disappointing answer to be sure -- disappointing on my end because, though things never got better, they never got worse either, meaning the end was still a long ways off; disappointing on my friends' end because I could tell by the tone of their voice that the lack of "events," tragic moments that I could cling to tearfully as signs of my dad's descent towards death, meant they were beginning to doubt if there really was anything wrong at all.  In fact, when my friends saw my dad, he looked not only fine, but quite healthy.  It wasn't until they talked to him that they might think him odd.  But it was only if they'd known him before the disease that they'd have a true sense of the change that had befallen him.  (For a taste of what it as like to spend a minute with him during that time, see my post, One Minute with Picks Disease.)

But this past year there has been a noticeable difference in my dad.  He does less (no more picking up coins in parking lots, moving pictures around on the walls, or doing dot-to-dots) and paces more (activity without productivity -- not that his previous actions were all that productive).  He nervously rubs his thumbnail across his pointer finger to the point where he's worn a groove in his finger.  He's confusing our names more often.  (He knows I'm Meg, but he doesn't seem to know what our relationship is.  And my mom has become his mom, even when his mother is in the room with them.) 

He's also, oddly enough, started to lean.  He doesn't always lean.  In fact, it only seems to happen a few times a week, most often when he's walking around my block.  But he'll round the bend and there it is, he's leaning to the left.  He doesn't seem to notice.  And after awhile he straightens back out.

And he's becoming increasingly silent, entering into the aphasia stage of the disease.  Some people with Picks hit this stage straight out, losing their ability to speak before they even begin to lose memory or ability to reason. But for my dad it's been gradual, sneaking upon us so stealthily, that when it finally dawned on us that he was losing language, he had already been reduced to about 500 words.  I don't know that he even understands most of what we say.  When asked a question, he will most often either ignore it, or nod his head and say "yes" before walking away.

Oddly enough, despite the fact that he's lost reason, memory and language, he has retained mechanical ability.  When I picked him up from day care yesterday, he was in the yard behind the building and the fence had a clip that kept the gate from opening.  There was another gate that wasn't locked, so I directed my dad toward it, but while I was busily gesturing and explaining, he walked right over to the closest gate and figured out how to undo the clip that was locking the latch.  He walked out without a word and headed straight to my car.  Before slipping into the passenger's side seat he muttered vaguely, "Let's go shopping, Meg," one of his few remaining phrases.

91 comments:

  1. So sad. At least you've gotten a lot of really good years with him before the disease started hitting him heavier. How many other stages are there to the disease after this one? Does it always take the same path of symptoms?

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  2. Plus look at the bright side of thing. When was the last time you heard another man say, "Let's go shopping"?

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  3. When I saw the headline, I thought it was a reference to Meg's political views... ;)

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  4. well, i don't know about that. they were years in which we couldn't have conversations with him, in which the police were called on him multiple times, in which my mom was near tears and wanting to kill him several times and during which we lost him several times and had to spend hours looking for him. :-( it all just went on a lot longer than we had anticipated.

    Does it always take the same path of symptoms?
    no. like i said, some people start out with the aphasia and move toward the loss of ability to reason or remember. not everyone has the severe anxiety (expressed through constant repetitions of the same phrase over and over or walking a lot or something like my dad's finger rubbing. often the person will pass through these phases at some point or other, and by the end they'll all be in the same state, but the progression and speed and whether or not they hit some things at all varies from person to person. a lot of it depends on what part of the brain is being affected and in what order it's getting hit.

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  5. speak softly and carry a left leaning stick, perhaps? ;-)

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  6. Me too, partly. When I saw the title, part of me had imagined this being a discussion about changing views away from the Republican "freedom to take care of yourself" to support Democratic "no one left behind" views which would offer mental health care benefits as a social security program.

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  7. i suppose mom's keeping consistent by insisting on taking care of my dad as much as possible on her own, then.

    she's done a lot of research on what she's allowed to keep after all of their money is sucked up into nursing home expenses ($6000/mo. + expenses (medications, depends, etc.). they also put them in depends whether they need them or not because they can't be bothered to help people find the bathroom. and they'd medicate him until he's drooling and wetting himself because they can't afford to have someone keep an eye on him 24/7. he's too active.) it boils down to keeping a house and a car. that's it. any other savings will go toward his care and i don't think he'll qualify for any state/federal help even after that because he'll still have his pension coming in - which won't cover everything. part of the problem is you don't know if the person will be in a nursing home for 2 months or 2 decades. so you have to plan for the long run.

    many care givers try to hold out because expenses are so high and then they end up committing suicide because they can't take it. my mom got a $1000 grant at one point to put my dad into day care more often. it was a part of a research study to see if care givers who used day care services more were less likely to kill themselves. my dad ended up getting kicked out of the two new centers that he went to on that money. (he was too active for them to watch and broke all the locks in one facility as he tried to get out.)

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  8. Sure, some not so great things happened, but then some really great things did happen. You may not remember them now, but you will. And you will be grateful for the years you sacrificed to be near him.

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  9. the good has been that we've been around my mom and sister. the kids have also had a better school experience here than we believe they would have had in SF. (nathan's was definitely better here than the short experience we had there.)

    but honestly, by dad has been gone for about 7 years. he was sorta with us before that. we've only been living with the alien that resides in his body since then. and the alien is incredibly annoying and not social at all. i love my dad and i try to be respectful to the shell that we take care of (just as i hope my shell is cared for if my brain goes the way my dad's has). but it's very clear to all of us (mom, sis and me) that the funeral should have been 7 years ago.

    there aren't "lucid moments" with picks. at least not with the picks we've experienced. there's occasional connection to knowledge. (he usually tells me that he's 50 years old, which is around when this started. the other day, though, he was able to correct himself and get to 63, which is his true age.) but there's no connection (and hasn't been for a very long time) to what we think of as "self" or "personality."

    "there's no there there." -- Gertrude Stein

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  10. I wonder how Picks patients are treated in Canada....

    Aloha mai Nai`a.

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  11. As best I can figure, the centers at the forefront of studying the disease are in the UK and Canada. (The Banana Lady Book was written by a Canadian doctor. ) But even the Banana Lady author admits that most doctors simply don't know enough about the disease to even diagnose it properly. (That's much of what he covers in the book - what symptoms look like and how to differentiate Picks from other diseases that have certain similar characteristics. Picks can be confused with a variety of things including Alzheimers, OCD, and Bipolar Disease just to name a few.)

    As far as treating it... probably the best way to treat the disease is to give the patient something to reduce agitation and to give the caregiver as much help as possible (day care centers, baby sitters, financial and legal advice, etc.). From what I can tell after talking to families in both the US and Canada, the doctors and services are about the same. The real difference comes from getting a doctor who's heard of Picks before and knows what the family is going through. (So it's hit and miss in either country.) It's really the family that needs the help more than the patient. They are the patient's only resource for not going into debt, not getting thrown in jail, eating, getting cleaned up, etc. But if the doctor thinks he's only supposed to deal with the patient, then he's leaving both the patient and the family in a lurch. (What's a lurch?)

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  12. The butler on The Addam's Family. *wink*

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  13. Drat! Beat me to the punch!

    Aloha mai Nai`a!

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  14. "...He's confusing our names more often." He even calls me 'Katie'...he hasn't called me 'Rob' in at least 2 years. He hasn't called me Meg yet...I'm not sure what to make of that.

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  15. I think that Lurch, as the butler on the Addam's family was only a parenthetical footnote. Here is an explanation of the idiom, "To leave someone in the lurch":
    to leave someone at a time when they need you to stay and help them. 'I hope they can find someone to replace me at work. I don't want to leave them in the lurch'
    Also: to cause someone to be in a situation in which they do not have what they need. "Her ex-husband didn't want to deal with the kids, so she was left in the lurch." "Factories here that rely on parts from overseas were suddenly left in the lurch when imports were suspended."

    I hope that helps. There is no information on the derivation of the word "lurch", which I grant is rather a strange sounding word.l

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  16. I was at church this evening and this subject came up. [not leaving in the lurch, but degenerative neural diseases]. A veterinarian brought up Psalm 104. It talks about all the wonderful creatures God has made, and towards the end it says God rejoices in all his creations. The point was that a starfish, which has no brain, just a central nervous system, is one of the creations which God rejoices in. The minister said that "There is an integrity of creation" and went on to explain that God rejoices in all his creations, even those for example, who are mentally retarded, or have degenerative conditions such as Alzheimer's. They are all God's creations, and he rejoices in them.

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  17. that's exactly what i'm wondering. i know how it's used. but since it's used as a noun, i assume that somewhere in the world is an object that actually IS a lurch.

    then again. maybe not. ;-)

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  18. i think there's creation as it was meant to be, and there's creation after the fall. i'd say alzheimers and picks falls under the second category and is part of the disintegration of the original integrity of creation.

    so while i think God may rejoice in dad, i have a hard time imaging him rejoicing in my dad's condition.

    the redeeming creation book that i reviewed recently covered the topic of, (well, duh, given the title) redeeming creation. the idea is that when man fell, all of creation fell with it. but God has provided a means of redemption, not for mankind only, but for all of creation. and christians, in fact, are supposed to be participating in this redemption as well by caring for the environment.

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  19. The word seems to predate the Addams family by quite a bit.

    lurch, noun [1598]

    a decisive defeat in which an opponent wins a game by more than double
    the defeated player's score especially in cribbage

    [Middle French lourche, adjective, defeated by a lurch, deceived]

    (C) 1997 by Merriam-Webster, Incorporated

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  20. excellent!

    what a great term. i'm gonna try to fit that into sentences more often.

    i should probably learn to play cribbage at some point.

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  21. is this something like alzhiemers?

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  22. yes. to find out more, you should watch my video on the topic that describes the difference between the two.

    or you might want to read my book review on the banana lady, which is a book on picks disease as well as all the other diseases that it's often confused with.

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  23. I just read The Banana Lady. Dr. Kertesz was actually the doctor who diagnosed my Dad in 2003 at St. Joseph's Hospital. A friend of a friend did their Masters thesis under him many years ago and mentioned that he studied dementia. After talking to his assistant and finally convincing my Mum that he needed to go, he was diagnosed. It was Dr. Kertesz who predicted that my Dad would be "institutionalized" within a year. He was unfortunately correct. I saw a few excerpts of this book before it was published but it seem too surreal at the time to make the connection to my Dad's situation. Now that I have read all the different cases he has written about, it is just too scary. Especially the chapters about Rachel and her sister and their father who also had the disease (another chapter). I can picture my sister and me in this situation not too far down the road. My grandmother was institutionalized at a very young age as well. What did you think of the book Meg?

    In the last week I took my Dad on two different walks through neighborhoods close to the nursing home. I had him lead the way back home. He still has a sense of direction! I thought it was really interesting...Does your Dad still lean to the left? Does he hold his face or mouth in a certain way/direction?

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  24. i thought it was excellent if for no other reason than that it validated that 1) we weren't making any of this up and 2) other people were experiencing it too. you can read my whole review here if you haven't already. i wish more doctors would read the book. not enough have any clue what picks is.

    I had him lead the way back home. He still has a sense of direction! I thought it was really interesting..
    though my dad hardly talks anymore (making you wonder how many words he understands), i was helping him get back home the other day (he was walking around in front of my house... until he wasn't. we found him a few blocks away.) and i said, "go left here, dad" mostly just because i try to stay conversational with him even though he doesn't converse. and as soon as i said that, he veered left! so yes, he still has directions down pat.

    i picked him up from day care a month ago and we needed to go out a gate. an alzheimers victim would never have figured out how to undo the clasp, but he did it in a matter of seconds. (i was trying to take him around another way so *i* wouldn't have to deal with it. lol!)

    Does your Dad still lean to the left?
    well, yes and no. he still leans left except when he's leaning right or standing up straights. ;-) you just never know.

    the leaning seems to happen after he's been walking for at least an hour. but you can never tell which side it will be. but once he settles into a side, that's the side he sticks to for awhile.

    i've noticed that i'm much more aware of whether other people lean now. i've seen a couple of older people do it since the time of this post.

    Does he hold his face or mouth in a certain way/direction?
    no, not that i've noticed. he rubs his fingers together a lot, though. he's worn a groove in his pointer finger with his thumb.

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  25. God bless Meg, you are a strong woman and I respect you for that. There are so many people that would cop out on matters like this, even for their own parents. Best Wishes,
    Betty

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  26. I agree. I wish more doctors would read The Banana Lady. I passed on two copies to my Dad's nursing home and his doctor. They had never heard of it and to be honest, kind of brushed it off. They have written down "Alzheimer's" on his chart with possible " Pick’s complex". It's frustrating to see the lack of knowledge or interest. On the other hand, my sister and I just had our care conference with the staff at the nursing home and they are taking excellent care of him. We even managed to convince them to reduce his Celexa by half (from 20mg to 10mg). The idea being that our Dad should be as much as "Dad" as he can possibly be without making him frustrated or upset. I don't like medications and thankfully he is not on much at all. We also just found out that his insurance will cover "physio" and asked his doctor to "prescribe" daily walks outside with a physio. tech. Such a relief as I can't guarantee to be there every day and he needs the exercise and Vitamin D. After reading some of the comments, I am more and more thankful for the Canadian health system. We are extremely lucky.

    I am constantly amazed by your posts Meg. The similarities between our Dads' behaviours are amazing and frightening at the same time. The Banana Lady does indeed validate what we are going through but you have given me a more personal window. You also write very eloquently and with so much in depth perspective.

    The Banana Lady scared me into researching more of my family history and results are frightening. I have launched into the world of genetics and I am not sure if it is the right thing. Any thoughts or comments on this?

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  27. i've been starting to deal more with the fact that in 10 years i might be starting my decline into picks. i'd rather prepare for it and not get it than not prepare (especially now that i have ideas of what i can do to prepare) and then get it.

    my dad is an only child. none of his cousins, parents, aunts or uncles have it. but beyond that, everyone was in ukraine, so we don't know what they were like.

    i'm praying that it was environmental reasons that my dad came down with it. but i'm trying to prepare emotionally for it to be genetic.

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  28. I am mostly concerned for my children and husband and dread the idea of putting them through this. You're right though. I guess we can only prepare as best we can and hope that there are more research breakthroughs down the line. I still want to give my children as much information as I can and I think that is really my main motivation behind the genetic testing.

    My father is an only child as well with all his remaining family (cousins) in Chile and a couple in Australia. It has been very hard to get information about his generation but I have now confirmed essentially that my father's mother had Pick's and died at the age of 66. She was institutionalized at a young age and her medical records read like The Banana Lady excerpts. It however cannot be confirmed as there was no autopsy done. Letters and documents constantly refer to my grandmother's mother (my father's grandmother) as "neurotic" but again, no real medical evidence.

    I came across this article you might find interesting. Fifteen generations is a very large family history...

    http://www.news.utoronto.ca/bin6/070718-3297.asp

    I too, believed and hoped that it might be environmental reasons but I just don't know anymore.

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  29. i was glad to see this, "The genetic form of the disease is rare; most cases occur randomly." I was worried that I was going to see the exact opposite.

    Thanks for the article. I'm going to send it on to the rest of my family.

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  30. Hi,
    I noticed that your icon avi tar had changed. You know, I had figured out that your brief venting episode was not really you. Pretty easy to me to know that you were really feeling stress from a multitude of areas. Well, enough psych...been there...anyway, your site has changed. Hope your not giving up because you have a great idea. Obviously, I only visited because "Dummy Books" have made my life easier. Hang in there kid, Ni (The Ancient One)

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  31. Hello,
    My mom was diagnosed with this disease 12 years ago. She has not spoken for eight years, shuffles when she walks now, has to be fed and changed, but she is still going strong. When will this end?

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  32. that is exactly what my mom is asking. physical my dad remains in good shape and he walks for hours a day.

    when we first found out about picks disease we were told that you generally lived 6 years past the point of diagnosis. that was over 7 or 8 years ago now for my dad.

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  33. Goes to show what those quacks know...

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  34. This is interesting. I studied Aphasia when I studied linguistics. I didn't know about Picks.

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  35. Meg I saw a thing on the news about how patience do better when the care level is higher and more interactive (go figure). You and the kids most likely gave him those extra years. STATION.

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  36. My dad had a stroke with aphasia 2 1/2 years ago now. I really feel what you are saying. I think sometimes the harest thing for me is morning someone who has not passed. I miss the "dates with dad" when we would sit and talk for hours. I miss my mentor and friend. He is still my friend and mentor but in much different ways. Thank you for sharing your story.

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  37. My mother has picks disease. She was diagnosed in 2001, although her behavior had been odd for a number of years prior to that. I am sorry to hear about your father, as I know all too well what its like to lose a parent to this illness. I hope that you have a strong support system and that your family remains intact as things progress.

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  38. hi e, thanks for stopping in.

    we're actually over the hump, i think. it was pretty miserable for awhile there as dad was aggressive and vocal and Annoying. but now he barely mumbles, walks mostly in circles, and has lost some of his strength and will so he's not so hard to redirect any more.

    i suppose this is a little breather before he starts getting so physically bad that he's hard to take care of again.

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  39. As someone who has traveled further down this road, I can say that each phase of the illness comes with its own challenges. In the beginning safety is such a huge issue to grapple with. Inevitably housing, finances, caretaking, end of life issues... all these are considerations. It goes on and on, and all the while you are losing someone that you love. My mother is on hospice now, what could easily be considered the end stage. I will always struggle with the notion of losing someone and not really losing them. They are there but its not them anymore. I imagine that in some way you can relate to this.
    I am pretty familiar with resources in the Northeast and California, and I am happy to provide any information if you ever needed it.

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  40. thanks! we tried to talk my parents into moving to san francisco near us when my dad was first diagnosed, but at the time a 2 bedroom house down the street from us, and across the street from a bunch of drug dealers, was selling for $650,000. so they ended up moving near my sister in colorado instead. and now that we're 9 years down the road i can see that this was such a better choice. there are not only a lot of resources here that don't exist in san francisco, but my dad would have been fleeced something awful by folks out there.

    we took a longish trip with my folks today and my dad did great. he didn't say a word the whole day (he mostly only whispers things he reads these days anyway) and he's so easy to wrangle back to the house when he tries to wander now. it's such a night and day difference from where we were 4 or 5 years ago.

    you should check out the dementia support group here on multiply, e. there might be people in that group that live near you and need help finding care, etc. i know we've heard some really hard stories where the spouse has to continue working but there's no care facility around that will take someone with picks. i wish there was a database of some sort with info. like that -- these folks take dementia patients even when they try to escape a lot, this place has individuals that will come to your home and watch the person, etc. that would be a tremendous help for so many people.

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  41. I hope you'd hang in there... Remain strong for him and your mom. I wish I could give you some fresh flowers from Ecuador. People say they have emotion-healing qualities.

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  42. Hello, I am new to the blogging scene, although I work in this industry, ha. My dad was diagnosed w/ Pick's Disease 6 years ago and is now in a hospice going through the final stages of the disease. I now understand why they call any form of "dementia" the long goodbye. This has been the longest and most painful ordeal of my life so far. I am very grateful to have found your blog, as I am now in anticpatory grief phase of watching and waiting for him to die. It is an ugly catch 22, as I of course do not wish for him to die, but at the same time, do not wish to see him in this awful state any longer. It is certainly no quality of life, from my point of view. I only wish I knew what he was thinking and feeling, as now he is unable to articulate anything. This is so such a confusing place to be, both for me and I am sure for him. The science of the brain is the most complex but why in the hell don't they know more about this disease yet? Supposedly Arnold Pick discovered this atrophy of the neuronal tissue in the brain in 1892. WTF???!!! Why haven't they made further progress in the diagnosis and treatment by now? I am obviously grief stricken, angry and sad right now as I watch my closest family member be taken hostage by this terrible disease.

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  43. i think alzheimers didn't get any press until a few key people got it: ronald reagan and ... shoot, there was an actress with it. i can't remember who it was now. (figures, eh?) ;-)

    though there has been one "famous" person to get picks (the doctor that started putting Z's in women's stomachs after he'd sew them up from having a C-section) i don't think it's really hit the radar of the general public. plus i think it's often misdiagnosed.

    i'd highly recommend the banana lady book. it's probably the best description and analysis, that's readable by the average person, that i've found. i think if this book got out to more doctors, there'd be more correct diagnoses and perhaps this disease would start getting the recognition and attention that it deserves.

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  44. My father has been diagnosed with FTD or Pick's Disease but the doctors haven't really focused very much energy on the diagnosis instead trying to treat the other mental illnesses that he has suffered from for most of his life. I am so overwhelmed as he doesn't recognise that he can't be on his own and must live in a group home now that his judgement has been so severely changed. He thinks he's fine and he blames his children for his current life situation. I used to be so close to my father but his behavior is so childlike and in denial that it is really hard being close to hime any longer. Is there a good book about how to retain a relationship with someone who has Pick's?

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  45. not that i know of, but that's a great idea!!!!!

    the best book i've read on picks is the Banana Lady book (my review is heredementia support group here on Multiply. i know we've talked about medications before a couple of times and there might be some tips in there that help out. my dad took an anti-depressant for awhile that helped (in part because it also made him sleepy which gave my mom a break).

    willfulness is part of the disease. thankfully my dad has finally gotten past that stage. (he's pretty docile these days.) but i think the whole "child" analogy is helpful. when he's behaving rudely or willfully or in some way that's inappropriate, remember that he's like a child in that he doesn't know any better and needs to be directed toward doing something else that's more appropriate. just because he used to know not to do something doesn't mean he still knows that. (in fact, that ability to discern stuff like that is one of the first things to go in anything fronto-temporal (or whatever they call the front part of the brain there).)

    is there a group home that's willing to take him in? that's often the other hard part of dealing with picks is that sometimes the nursing homes can't handle it either.

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  46. My father is in a small and lovely group home with 4 other people. He has excellent care in a very nice home. We tried to keep him at home with us but he was out of control, wanted to drive even though he's on mega doses of narcotics and half blind. Also, his behaviors were extreme saying he was cold even when the house was 92 degrees and everyone else was wearing shorts. He would get really mean and he became parasuicidal. It forced my family into having to find a safe place with people who could monitor his behavior and take care of his medicine. It seems like it has been bad for four years now but he hasn't gone through the loss of language skills yet. He's really defiant and angry.

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  47. Did you have experiences with your dad surrounding OCD and denial? My dad absolutely says there is nothing wrong with himself, and that everyone is making up lies/big conspiracy. Did you go through this?

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  48. I wouldn't say that my dad went off the deep end with either of those, but he did have little hints of things -- like always straightening things on the counter and straightening out the chairs around the table. The denial seemed more like forgetting than anything.

    But what you're describing (the belligerence and denial in particular) do sound like a friend of mine who I suspect of having Alzheimers (though he and his wife Refuse to get him diagnosed because I am obviously out of my mind and don't know what I'm talking about. The fact that I have documented evidence that he's done stuff that he's denying doesn't seem to convince either of them. And the fact that his dad had Alzheimers doesn't seem to be a warning sign for either of them, either. *sigh*)

    ... lol! my mom just called while I was typing this and I asked, "Do you think dad had OCD or was in denial?" And she said, "Yes! He definitely had OCD. In fact, isn't that one of the things they mention in the book?" (meaning the Banana Lady book that I mentioned before.) Then she said, "And denial? Yeah, definitely."

    I suppose what this shows is that though it can be horrible in the middle of it, as time progresses you start to forget the hard times. ;-) That's a good thing, I suppose.

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  49. I agree with you Meg. I have forgotten or blocked out some of horrible stuff that went on in the beginning and middle of the disease. Now I just focus on the good stuff, and the ease of spending time with my Dad. Very different than in the early years where I spent so much energy distracting him when he was focused on something negative or becoming agitated. Very much like taking care of a small child.

    In the early years of the disease, and long before the diagnosis, he was deep in DENIAL and exhibited every kind of OCD behaviour you could think of. He always showed tendencies of OCD so it was a hard to convince friends that there was really anything wrong. They just thought he was just being his usual eccentric self. Bottom line. They didn't live with him. It was that simple. I can relate to your climate issues in the house. We grew up in a house without air conditioning. No big deal. It was super hot but we managed with opening windows, fans etc.. In the early stages of the disease, my Dad had air conditioning installed in the house and then ran it all year long. So much so in the summer, that the unit shut down/broke with ice jamming. The house was an ice box. You could not open the windows or he would push you and he hit my mother when she opened the bathroom window after a shower. Just one very small example but sometimes the similarities can be eery. Like both Meg's Dad and my Dad had an obsession with dog poo. My Dad would count it, point it out, call it out when he saw it, non-stop focusing on it whenever we went out. That was a long time ago but it was definitely obsessive during that time.

    I found the Banana Lady book excellent and accurate. Nothing else out there that gets down to the nitty gritties of Pick's disease. It definitely gives family and friends an insight into the chemical/biological reasons behind the disease. This is what I MUST emphasize and it's my own personal thoughts/feelings on Picks. Your Dad is not able to control his behaviour. No, you cannot rationalize with him anymore. That is one of the saddest parts. It broke my heart as I was always able to talk to my Dad about anything personal. Even more so than my Mum for some reason. We were so close. I knew something was terribly wrong when that connection was lost and I could not talk about the OCD or that something was wrong. He was not capable of understanding what I was talking about. Picks had taken over. All sense of judgement was gone which is what the frontal lobe controls. I know your Dad is still very angry and you may want to look at what medication he is on. Some doctors prescribe Alzheimer medications which actually cause Pick's patients to become more aggressive and angry. My Dad is on 10 mg of Celexa which keeps him less agitated but not sedated. It's a very small dose but helps. Regardless, your Dad will eventually become less angry and this frustrating phase will be soon be a memory.

    My thoughts and prayers are with you... I hope that this group can help you find ways to cope with your Dad's illness or at least find some of the support you need.

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  50. i think this is key. so many times my mom would explain things to my dad over and over again until she was ready to scream and i'd repeatedly point out, "mom, you can't reason with him. don't bother." but i think she was still so used to being able to do that that she couldn't let go of the idea for quite awhile. it ended up frustrating my mom more and my dad didn't seem to care one way or the other.

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  51. Thank you everyone for giving me feedback, my father is so convincing at times you almost believe what he's saying because he believes it so strongly. Like queenofthefairies said there is no more rationalizing. I used to be so close to my father and this disease seems to have taken the best part of him away. Thank you for responding to my inquiries it feels like no one understands sometimes what my family has been going through. It is nice to know that eventually there is a different level that the Pick's affected person will transcend to.

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  52. i think the point you all are at is the hardest. when my dad was in that stage he *looked* normal and people who didn't know him thought he was behaving oddly, but that that must be how he always was and that it was intentional. they didn't get that that wasn't him. and they didn't understand why we were so upset and depressed about it all. since they just thought he was being rude on purpose, they thought counseling or something along those lines was all that was needed. ... that was from the generous folks. others who didn't know us at all would call the police because of dad's "suspicious behavior" (like walking around in parking lots looking for coins. they thought he was casing cars.)

    when someone is "sick" every expects you to be sad about the sickness. but when someone looks healthy, then what's the problem? they couldn't get that the utter embarrassment of having to deal with him in public and apologize for his behavior was utterly demoralizing (especially for my mom). continually losing him (one time he walked several miles past where he had been last seen and who knows how much traffic he walked right in front of) was exhausting. people would ask me, "how is your dad taking it?" and i wanted to throttle them. my dad was utterly blase about it all. he didn't have a care in the world. but my mom was being suffocated in a life that was beyond her control and that no one seemed to "get."

    that is a hard, hard stage to go through. definitely the worst stage we've hit. my dad is messing in his pants on occasion now and despite that my mom still says it's easier to deal with him now than it was then. if you can make it through that stage, you can make it through anything.

    i wish there was a way to educate more people about picks. i think it would help people to be more sympathetic to the care givers.

    *hugs* we'll be your loudest cheerleaders because we've been there and know what you're going through. it does end. you've just go to hold on till it gets better.

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  53. I am very very sorry to hear about your father. In some ways reading your comment is like seeing what I often think. My mother has picks disease. She was diagnosed close to 9 years ago. She was on hospice for a long time, but finally they closed her case. She is a shell of her former self. I dread constantly the phone call that she is gone, and yet seeing her like this is heartbreaking and incredibly wrong. There are so many sources that say they arent thinking much of anything. But how can anyone really confirm this? I can take a guess from her inability to really focus when I speak to her, but I cant say for sure. Even with the research that has been done on alzheimers, there has been no cure identified. These diagnoses are essentially terminal. It is astonishing to me that with the rate of dementia in this country they dont have some lead on a cure. My fingers will remain crossed.

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  54. Hi Meg
    I am sorry to hear about your Dad. It is such a difficult, cruel thing to deal with and as a carer and you feel the person drift away, bit by bit.
    My daughter is in the asphasia stage but is not definately diagnosed, but has deteriorated since age 13, she is now 23 and finding walking and everything difficult. One thing she loves is films like Pretty Women and The Spice Girls Movie and will watch again and again.
    My thoughts are with you.

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  55. wow, so young! that's very sad.

    my dad used to like music, but i don't really see him respond even to that any more. it's nice when there's something that they gravitate towards. not only do you get a little break as caregiver but you feel like they're getting a little joy out of something, even if it's just something simple.

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  56. Meg Im sorry to hear that your father is entering into a new phase of decline. Its so hard with picks disease because people seem to plateu for so long. My mother has literally been in the same way for a few years now: silent, wheelchair bound, repetitive checking of her hands, and perhaps even a loss of memory. Her weight might change by a pound or two but otherwise she is stable. She is still in limbo between here and gone, and in a way that prolongs the heartbreak. I hope as always that you have strong support in your life so that you never have to go through this alone.

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  57. I am so glad i stumbled across your posts. The site is really helpful to me. I feel sorry for adults in early stages whose families don't know what is happeneing. It is so sad but easier to deal with my daughter now. I do feel more full of sorrow know she has stopped some of the strange behaviour but glad she still has some pleasures left. It is easier to cope in some ways as people and myself are more undertsanding now but sadly that has taken many years and only when you look back do you see it. I wish I could time travel back knowing some of what I know now.

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  58. oh, definitely!

    and i wish people could have looked at my dad 5 years ago and seen where he is now. maybe then they wouldn't have blamed them for his behavior as much as they did. it's abundantly evident now that he's sick. but they didn't see any of those signs back then, even when we did.

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  59. My wife is the Banana Lady. She is still alive in a nursing home. I visit her weakly. Please feel free to contact me if you have any questions. I supplied the pen and ink drawing of the puppy to Dr. Andrew K. and permission to write about her . She is probably the longest living Pick's patient in the world. Please feel free to contact me at crtsemimental@gmail.com I would take my wife to London Ontario Canada for Dr. K, to study her decline, on a regular basis until she was put in a nursing home. Thankyou for reading this.

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  60. How long has it been since she was first diagnosed?

    My dad was diagnosed 10 years ago, but he pretty clearly has been showing signs since probably about 15 years ago.

    The Banana Lady book is fantastic. Not just your wife, but several of the people described in that book did the Exact same things my dad was/is doing. It was so (this might sound weird, but it's true) comforting to know that my dad wasn't just being weird, but he shared his distinct (and odd) behaviors with other victims.

    Thanks for popping in! It's neat to meet you. :-)

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  61. My wife Jean was diagnosed in Feb. of 1999. She started to mispronounce commom words in 1997 and for 2 years we took her to numerous Dr,'s. A doctor put her in his psyc.ward and for 3 weeks he gave her every possible test. He stumbled on the difference in and old M.R.I. and the one he had just taken. The frontal lobe had significant shrinkage.That is when he sent us to Dr. Andrew K.

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  62. something else of interest. As the frontal lobe is being eaten areas of the brain are stimulated before they are destroyed,resulting in short lived pockets of genious.With Jean one of hers was shapes and colour ( for you Americans "color"). Never having done a jig saw puzzle before she would do a 1000 pc. puzzle in 2 days,never testing if a piece fit, whin she picked up a wrong piece she would hold it up and look at it and put it down, only when she had the right on would she put it in place.

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  63. My wife Jean was diagnosed in Feb. of 1999. She started to mispronounce commom words in 1997 and for 2 years we took her to numerous Dr,'s. A doctor put her in his psyc.ward and for 3 weeks he gave her every possible test. He stumbled on the difference in and old M.R.I. and the one he had just taken. The frontal lobe had significant shrinkage.That is when he sent us to Dr. Andrew K.

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  64. My Dad started showing big changes in behaviour in 1996 but no one would believe me that something was different. I even tried to have a conversation with my Dad about the changes and he brushed them off saying there was nothing different. Even after years of taking him to the doctor and jumping up and down saying something was wrong, it wasn't until 2003 that he had his first CatScan & MRI. That's when he was officially diagnosed with FTDP. The technician asked if he had been in an accident involving a head injury due to the "swiss cheese" picture of his frontal lobe in the MRI. He had been showing very altered behaviour/symptoms for 7 years at that point. He went into nursing care at age 63 in July 2004. Fourteen years of symptoms, and 6 of them in nursing care so far. He is still going strong. Nothing wrong with him health wise. Nothing. Just the dementia. He is fitter than the average male his age due to the walking and his lifestyle before. My great grandfather, my great uncle, and my grandmother all on one side of the family had the disease. My grandmother started showing symptoms in her late thirties and died when she was 63. She spent years in different institutions with the diagnosis of "alcoholic" but she continued to exhibit all the same behaviour despite not being able to consume alcohol in the hospital. We took my Dad to see Dr. K in 2003 and he told us at that time that my Dad would be institutionalized within a year of our visit. He was correct unfortunately.
    In another brief phone conversation I had with Dr. K, he told me that there was no way I would get the disease and that I shouldn't concern myself with it. Through genetic counselling, it is definitely "Familial Picks" and both my sister and myself have a 50/50 chance of getting it.

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  65. wow! that's really interesting.

    my dad did puzzles for a while. and he Really like dot-to-dots. it was a great way to get him to sit still and stop asking questions for a bit at a time. it was a welcome relief for my mom.

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  66. Regarding how to cope. I found this comforting. You know it is the disease not the person.....but if a horse steps on your foot by accident or on purpose the pain is the same. ***There is no guilt in feeling the pain!!!. The only difference is....If the horse did it by accident then you don't want to get a 2x4 and hit him over the head.Some friends and familys comments are frustrating... them you feel like getting out the 2x4.

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  67. The Picks patient can be very convincing. I have the medical correspondence between the two doctors that treated Jean.She was so convincing that she had them both believing that the spouce...ME...that I was a horrible man.They forgot that she had Picks. It took years to change that opinion.

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  68. there's a gal in the dementia group here who has had exactly that problem. the family members have all decided she's just trying to get rid of her husband by putting him in a nursing home when the reality is that she has no support and is barely surviving herself because of all the work and stress involved.

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  69. In the last 4 weeks Jean has gone from freely wandering around the locked ward and what we call bed surfing, to now being wheel chair bound. Over a 2 day period her legs just forgot how to work.It was a sudden changs and seems to be perminent. How is your father doing?
    By for now ....Craig

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  70. my dad still walks like crazy. i never thought about the fact that legs would forget how to walk. i'd heard that patients might forget to swallow at some point, though.

    thanks for the update, craig. it sounds like you're a bit ahead of us. please keep us updated. sometimes it's nice to know what to expect is coming.

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  71. Hi Meg...my names Janine Im 23yrs old and my Dad was diagnosed with Picks almost 7 years old but has definitely shown signs long before then. When I read your blog I feel like your father and mine have gone through the stages very similarly. I remember when my Dad appeared perfectly normal to everyone else but to us we knew his actions were inappropriate and far from his normal character. He walked off his job where he was very successful, the police have been to my house several times as well from my Dad walking around the neighborhood knocking on peoples doors and trying to come inside, we actually lost him in center city philadelphia over night when he wandered out of my older brothers apartment and had his picture on the news until he was found by police the next morning. He went through the OCD faze where he was extremely paranoid thinking that someone was going to break into our house and was constantly up making sure the doors were locked at all hours of the night or checking our basement for "intruders" he also was completely oblivious and denied any change in himself. My dad is now becoming more docile which has made things some what easier, his vocabulary has almost completely diminished except for "can I eat that" of course, and hes become completely incontinent fully requiring diapers; however just like you said about your father mine is also extremely active and still very physically healthy. But, our cabinet in our kitchen, refrigerator, and bathrooms all most be locked because he will eat anything and everything including shampoo or toothpaste. My mom like yours, is still caring for him at home by herself, I also live at home to lend a hand also. I was so happy that I came across your blog, it helps knowing there are others going through the same craziness that I do everyday. I definitely understand the struggle you and your family go through especially our mothers, and it feels like there is no end in sight my father to me has been gone for years I now just live with a shell of a person.

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  72. yes, they sound very similar.

    what helped my mom a lot when my dad was in the "seems ok but we know he's not" phase was sending him to an adult day care. it was a real relief to her to not have to think about him for several hours.

    my dad doesn't talk at all any more. in the mornings he sits in a chair looking at catalogs or magazines -- whatever my mom sets in front of him. then around 2 o'clock he suddenly gets up and starts walking around the house, which he does for the rest of the day.

    my dad still eats everything in sight, but at least if it's not in sight, he doesn't think to look for it to eat it. my mom has friends over for lunch and my dad will reach right over and take their food off their plate! thankfully all of mom's friends just roll with it. :-}

    thanks for sharing your story, janine. it really does help to know there are others out there going through the same thing.

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  73. Hi my mom has picks going on 15 years now she is now losing. Weigh very fast she has to be feed and has to be cared for 24/7 she sits in her chair and moves her head around she has not talked or made a sound in the last 3 years I just wish I could know what she is thinking or feeling

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  74. she sounds much further along than my dad, though he hasn't spoken in at least 3 years either.

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  75. I have a dear friend that has Picks. I have been wondering about the end stage and after reading the blog I recognize behaviors. My friend seems physically strong. Recently she has hit her caregiver and her husband. She will get up and leave suddenly and head out to the street. She thinks the caregiver is taking her stuff and refuses to let her put her clothes on. I started reading this to understand where my friend is in the illness and how to relate to her when I see her. Thanks to everyone for insight and may God bless you.

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  76. Hmmm, if I tried to list stages, it might go something like this (There's probably an official list somewhere, but this is what I've seen):

    1. Initially they still seem pretty darn normal with occasional odd fixations or behavior and occasional lapses in memory or inability to grasp something they would have been able to understand before the disease began.

    2. Increased odd behavior to the point that they still seem fairly normal to strangers (if not very odd) but they can no longer hold down a job due to their erratic behavior.

    3. Fixations become the norm, from talking about a specific topic to wanting to do odd things. (My dad loved to look for coins in parking lots.) They are still physically strong and willful which makes this a very hard stage for caregivers. You can't reason with them. Their ability to understand a line of thought is completely gone.

    4. Though still active, at this point it's starting to become clear even to strangers that something is wrong with the person. Physical effects start to take place (like I talked about in the original article here - my dad kept walking and walking to the point that he was leaning sideways). They begin to talk less or quit talking altogether. (I've heard some people say that talking went much earlier on in their loved one.)

    5. The person finally begins to slow down. They'll sit in a chair for a long stretch of time. They don't talk any more. You're not sure if they recognize anyone. They can't tell you if they feel sick. They may not be able to use the bathroom on their own any more. This is where my dad is now.

    6. Eventually the body will start to forget how to work. Death often comes in the form of pneumonia due to aspirated food or from the body simply shutting itself down.

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  77. Hello Meg: My wife, the Banana Lady, is still alive but there is nothing left of her,almost....she still smiles and loves to hold hands but other than that there are no volintary movements. I still visit her weekly with great emotional damage but I feel worse if I don't go. At what stage is your dad?? sorry about my spelling.

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  78. hi craig,

    my dad sits all morning moving his mouth around and drawing with his finger in catalogs. (it looks like he's tracing lines of objects, but his lines don't really match up with the object except that they're near each other.) then around 2 he gets up and walks in circles around the kitchen, dining room and living room and back to the kitchen.

    he hasn't talked in ages and ages. he doesn't really interact at all except to look up if you happen to be standing in his way when he's trying to walk by you. he eats whatever happens to be lying around, like a bar of soap in the tub or pills my mom's set out for herself on the counter.

    in general, it's been much easier on my mom to take care of my dad now. at least he's not out around town getting in trouble any more.

    my dad hasn't really smiled in quite a long time... since before he stopped talking. enjoy that while you can. :-}

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  79. I am thrilled when i have a "normal conversation" with my mom. It is a good one when she remembers all of my kids names and the activities that they are fond of doing. I live in Florida and she lives in Massachusetts so I don't get to see her as often as I want to. I am cherishing all of the positives right now since I know it will be getting worse as time goes on. I was doing an example of a project for my students, they are all choosing a disease to research and make a brochure about. I decided to make an example one using my mom's disease that I really didn't know a whole lot of information about. Thanks for posting about your dad, I feel for you and your entire family and I know what you are going through I am just in the beginning part of the Disease with my mom. God Bless.
    Alli

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  80. Hi Alli. I think that by the time my dad was diagnosed, "normal" conversations with him were already well into the zone where he'd only talk about his few fixations and then he'd talk about them A LOT. One thing that ticks me off about Picks disease is that often your last few somewhat normal memories of your parent are of them being incredibly annoying or embarrassing. We don't get any lucid moments. By the point of the diagnoses, he was gone, it was just really hard to tell because he still looked rather normal. But he was so focused on his little weirdnesses that we couldn't get him to talk about other things.

    I don't know how it came up, but I just mentioned to my kids the other day how much my dad would have loved getting to know them all. My usually unemotional son said, "Stop, mom. Now I'm getting all teary eyed."

    Anyway, all of this to say, "Yes! treasure any and every decent conversation you're able to have with your mom!" :-}

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  81. Hi I have a sister who has picks she started at 54 she is gong to be 64 this year. She eats anything she can put in her month, She has to be watch 24/7. Still pretty healthy. I took her out of nursing home going on 7 years because in the home she went from 140 pounds to 210 in a year. I took her to a dr. and we got 60 pounds off her and she is doing much better with our care the only thing she know not is to eat drink and pee . So sad to watch and I sometimes think that she will outtlive me.

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  82. hi liz. my mom hasn't put my dad in a nursing home because she's afraid they'll just drug him up so he won't walk around so much. but i hadn't thought about the fact that he'd eat a lot more there. he also eats everything site. my mom has left him alone in the bathtub before and come back to find a bite out of the soap. it's amazing how strong their bodies can remain when their mind is entirely gone. we've often wished there was some way we could gift our dad's physical healthiness to someone with parkinson's or MS.

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  83. Hi meg. I'm so grateful for your blog because it makes me feel that I'm not alone. My mom was diagnosed with Pick's almost 8 years ago. We think it might have started 2 years before her diagnose. She is now 61 and leaves with her sister who has hired lived in help who help her bathe, eat, dress, changes her diaper, feeds her medicine and helps her walk by holding her arm. She used to talk to the mirror but nothing articulated it was more like babble or mumble and paced around the house. Now she doesn't babble as much and because she has fallen down a couple of times while walking we think that she has lost her balance, maybe the disease has reached the cerebelum. Recently her eyelids have become droopy and her back muscles sort of rigid like if her torso is rotating to the left. Her doctor said she entered the last stage but no body knows how long would that be or how much worse would it get. As an only child I miss her dearly and I am scared to have inherited although she is the first one in my family to have had that. I only wish there was a cure or t least a more accurate way to prevent this cruel illness.

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  84. Hello Meg and Everyone!
    Been awhile since I have posted. Our lives have changed a bit. We moved into my parents home in January 2012. Ironically enough it wasn't to help with my Dad's care. Mom didn't need that. However she did need companionship. This disease leaves the spouse/caregiver in a very solitary and lonely state. When we moved in some family members commented that we "were giving our young childeren (13 & 8) a front row seat to the demise of their grandfather." I read crtsemi post and really wanted to get a 2x4 and pound them with it. We choose to think that we are giving our children a real life lesson in compassion, empathy and self sacrifice in a very real, and raw situation. Other cultures have been caring for their aging loved ones, very successfully and building strong families in the interim. Why in this country is it so hard to see the need? and the solution? I agree it isn't for everyone, but don't verbally add further stress to an already difficult situation! I also noticed your post Meg, about the stages picks patients go thru. I agree and my dad is in your stage 5. He used to roam, now he sits in his chair all day rubbing his foot back and forth on the carpet. He has worn a hole in carpet that withstood my parents raising 7 kids, I didn't think anything could take this carpet out. He has a few looping questions that he asks over and over. "what's your cell phone number?" and " whats for breakfast/lunch/dinner?" He asks the cell phone thing from the time he wakes in the am till the time he goes to bed at night. My number is the only one he knows by heart, I probably hear it on an average several hundred times a day. The question about meals is asked always right after he just ate.....weird! Last week he had a series of small seizures over the course of about 10 minutes. His arm convulsed and pulled tightly up to his body, while his eyes rolled and twitched. We took him to his nuerologist, who said that seizures are a symptom of Pick's. I haven't read anything on here about seizures. Anyone else had the same experience with seizures? I think it is frustrating that their is so little info from doctors on Pick's. This blog is my best resource. My Dad is in diapers, still mobile but chooses to sit in his chair, sometimes only getting up to come to table to eat, he is weak physically (we have lift chair now), and his voice is much weaker. This disease is crappy and yet I am not certain we have seen the worst....

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  85. My dad has passed out, but he hasn't had seizures.

    I agree that keeping the kids involved teaches them to care for others even when they can no longer care about you. And every once in awhile something will happen that will remind me of my dad before he got Picks and I'll tell the kids about it. That reminds them that who you might be today is not necessarily who you were 10 or 20 years ago. I suspect it's a lesson that will take them time to learn, but they'll be ahead of many kids who haven't had to face the subject at all.

    I think one of the things that's helped my mom more than anything else was to have her grandkids around to distract her from the hard things she was going through. Granted, they're teenagers now and not nearly so cute or fun to be around. But thankfully my sister just adopted a little boy, so my mom has a grandbaby in her life again. Grandkids are a reminder that life starts anew and that we can participate in that even as we grow older.

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  86. Hello, I just found your site and I am always looking for information on this disease because my husband was diagnosed 11/08 and he has been in assisted living memory care since 2009. Looking back I could have saved money by keeping him home, but he was such an active and outgoing person that I thought I was helping him to stay healthy longer by having some interaction with other people. In fact the staff would tell me he thought he worked there, he was always helping them set up for dinner and would greet everyone that entered the facility. It kept him active and he enjoyed the conversations, even if they were about the same things over and over. Now, 3yrs later, he is at another memory care assisted facility but he has progressed steadily downhill. At present he is under Hospice due his decline. He has to be prompted to get up from a chair and assisted also prompted and assisted with eating, which he is now slowing down on. He is forgetting to swallow his food, which they call pocketing(chewing and moving it side to side but never swallowing.) He is losing weight and needs full assistance with bathing, he is urine incontenient wearing depends. Unless you ask him something he just sits and stares with blank looks. He has lost all comprehenion, reasoning, processing of what he hears. He scored a zero on the last mini mental exam. Sentences are almost nill, he recokonizes me as the person that comes to see him often but forgets my name and doesn't seem to understand that I am his wife. It so sad to watch him decline, the hospice nurse asked me if I wanted to start him on protein supplements today since he is not eating as much. This is yet another decline in his condition. I know know why they call it the long goodbye, because it seems like I am on and endless road traveling to knowhere. I can't say any good words about this disease, it takes its toll on everyone. Sometimes I think he is better off than me because he just sits there day after day eating and sleeping with no worries at all. Me, I am carrying at the worries, a lot of which are financial, I am now having to move into a low income housing apartment complex because I lost my job and only have my SS to support myself. It takes all of his income just to take care of him. We always thought that he would be living a good life and enjoying ourselves traveling and having fun, well I have learned that the "Golden Years" are so golden now. I sit alone, day in an out, can't afford to go and do anything fun. A relative once told me: if you want to make God laugh, tell him your plans! I bet he has had a big laugh on us.

    Hope you are keeping your spirits up, I am trying.

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  87. Hi Jackie. My mom feels the exact same way about missing out on her Golden Years. She's been taking care of my dad for 15 years now and we're only recently starting to see the signs that a final decline might be happening. My dad hasn't spoken for years and the rest of your description of your husband sounds very much like my dad. So we know what you're going through as we're at the same stage. As bad as it sounds to say, we're hopeful this might all be over soon. My dad has not only been having more trouble eating, but he's been eating things like watches and soap, which is very frustrating for my mom. But there's only so much you can do and only so much you can worry about. So you do what you must to get by. Thanks for sharing your experiences, Jackie. :-) Meg

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