April 23, 2006

Pick's Disease

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To see the full video, click through to watch it on YouTube

My dad was diagnosed with Pick's disease in the year 2000. I put together this movie in order to help people better understand what it is my family (especially my mom) is going through.

This movie is just over 6 minutes long.

To get to the online support group that is mentioned at the end of the movie, you can just click here. (That group will end when Multiply does. But I've found a new community on Google that looks promising (12/22/12.)


  1. Wow. That was extremely moving.

    Thank you for sharing Meg.

  2. :(

    ... I'm at a loss for words.
    I guess there's no other resources than the "Elder-Care" facilities, yeah?
    What is the prognosis?

    I guess the bottom line is, how much longer does he have to live, and what does your mom have to look forward to as the disease "progresses"?

    Aloha mai Nai`a.

  3. at the time of his diagnosis he was given 6 years to live. i think we reached that point a few months back.

    from here on out it should look very much like alzheimers. (it's only in the beginning when it looks rather different, but eventually both destroy the entire brain so they both look the same, even though it's different things doing the destruction.)

    eventually his body will "forget" how to work and he'll most likely die of pneumonia or something like that. that is, if my mom doesn't do him in before that.

    as far as other facilities, just two weeks ago a new place opened up for alzheimer's patients. apparently it's been a full time (as in nursing home type) place for at least a year, but they just opened it up for day time only patients. it's entirely enclosed and has courtyards (surrounded by building) so they could toss coins out there and my dad would be in his glory. it's rather expensive ($60 for 5 hours, i believe.) but my mom has been trying to get him in all the same. unfortunately, they've been less than helpful in getting the paper work to her, etc. i hope this isn't indicative of their care giving.

  4. I, too, am at a loss for words, Meg. Which is really saying something for me to be like that. My thoughts are with you.

  5. Meg, that was a very informative and personal video...thank you for sharing it.

  6. Hi UBFM, Well I finally got time to check out your vids. My heart is broken. You know Meg, just when I thought I had insurmountable problems, I run across your vid and thank God that my miniscule problems are as small as they are. If I had any that are as half as burdening as yours, I wouldn't cut it. So Meg just know this, that my heart is with you and your family, and may the Lord comfort you and give you the peace that surpasses all understanding. God Bless. brother Dan.

  7. thanks, dan.

    for some reason i find myself getting teary eyed about dad more than i have been in the past. i don't know what's so different to make me sadder. maybe my unconscious is picking up on something i haven't otherwise identified yet.

  8. Meg,
    I just viewed your video and I am 49 and waiting for tests to be performed on my 54 year old husband. We have 3 daughters 22, 16, & 15. I think we have been dealing with this for years or something similar. I hope I have the strength that your Mom has.

  9. I don't think any of us have the strength for it, to be perfectly honest. But we do our best and hope that we are supporting each other well.

    Let us know how the tests come out. And I'll send you an invite to the dementia support group.

  10. Hi again, Mike again. I guess a year has now passed since you did the video,
    but as I played it, it stopped after only a minute or so. I didn`t see the whole vid.
    If I may ask, how is dad doing these days? And I`m sorry to ask, what is up with
    the deleted reply stuff. I`m a newbie here and do`nt understand.

  11. hmmm, maybe try again. if you can't get it to work here, you can also see it here (on multiply), or here (on youtube).

    my dad is much worse than in the video, but we still haven't moved him to a nursing home. my mom is considering getting more in home care.

    he was off of his paxil for a few months and that made a Huge difference (for the worse). he's back on it now and we're at another bearable level. but he's still less functional than he was in this video. i'm thinking that i should be recording him some more to make a second video. anything i can do to help people understand this disease will, hopefully, help the families of picks victims who need support and encouragement.

  12. Hi Meg,
    Thanks for the link. I was able to view your vid this time.Now I`m depressed and I don`t even know you. I can only imagine how difficult this can be. Where is Dr. Kevorkian when ya need him! My heart goes out to you.

  13. I just buried my mother yesterday. She had Pick's, well, I guess we should say "probable Pick's", which is how the doctor diagnosed it. We opted not to have a brain biopsy or autopsy.

    I believe my mom's Pick's was brought on by the fact that she took Nolvadex (Tamoxifen) for over 12 years. You are only supposed to take it for 5 years to prevent cancer from returning.

    I hate Pick's disease. It blows big time. It makes a person look like a lunatic and it tears families apart. I loathe it.

  14. hi missy. yeah, picks sucks. in some ways it's better than alz. because the victim doesn't realize what's going on. but it's definitely harder on the family because no one else understands why the victim looks so normal but is acting so weird.

    i've never heard of a *cause* for picks before. that's really interesting. we've wondered if my dad's picks was brought on by the stress of his PhD, but i don't know of any drugs that he took for any length of time that might have caused it. (he was in the air force, though, and i've always wondered if he was exposed to something through the military that caused it.)

    we'd love to have you join us in the dementia support group. i'm sure you've gone through a lot of things that we're all heading into and could use advice and empathy on. (but if you don't want to join, i totally understand. i think when my dad is gone my mom is going to do all she can to forget about this disease.)

  15. Hello
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  16. Hi, my father has a friend who has been diagnosed with Picks for about 2 yrs now. He is at the stage of running around like a baby and runs away. We are very concerned for his wife. She has been his soul caretaker and she called my dad today and said that something had to give. Their son doesn't help much. So my parents and myself are going by there tonight to visit and see what we can do to help. He is so big and is strong as an ox. We are so scared he is going to hurt her. Just today he pushed her down and sat on her, he thought he was playing a game. She is so small compared to him. Thank you for your short video. We know that Robert doesn't have a lot of time left before he will need to be sedated to control his behavior. He is so big, 6ft plus and probably weighs 250 lbs (solid lbs) He is a big baby and your right, he doesn't know he has a problem. He loves life, he is always laughing and playing. Its the people left to deal with him that need the support. I can say that my parents have made it their goal to help him and his wife out with this situation. I have to go now, we are heading over there. Its so sad, this man has known me since that day I was born (25 yrs ago) and now he doesnt even remember me. It just breaks my heart. Pls know that your family are in our prayers and again thank you for making people aware of this disease that takes your life slowly but surely.

  17. May the Lord keep you and your family strong in His faith.

  18. Being a nurse for over 35 years, I have been closely associated with those that have been said to have lost their memory. After close inspection of some of those patients, I have discovered that their right brain retains much of their automatic memory. The problems with reaching this side of the brain is that it is non communicative and appears to be compromised when it isn't. The dance, art and creativity of this side of the brain appears to be maintained far after the left brain has been compromised. If one can pick out the actions that are being presented by the patient, sometimes a person who has know a person for a long time can pick out the actions and pinpoint what message the right brain might be sending. For example, dancing may be a "I am happy message". Watching Meg's father place his hand upon the picture in a recognizable gesture that he has used in the past, He has stepped into a memory and brings that to the present much as one would do when they are telling old stories of their life. Each of us lives in several states. The present, when we are in the moment. In the past when we are thinking of what has gone before us, and in the future as we plan for things so that we can keep things organized. It seems the past plays a more significant role in the roll of the elderly mind and it also seems to have a parrallel in the patient with dementia. Present thinking appears to be slow or non existant, but the right brain seems to keep trying to communicate in strange and creative ways. It is often difficult to understand this new type of art and creativity and what it is trying to say.
    Poetry from the past may repeated over and over. For example, my husband brought me lunch and it was a hamburger. One of my patients came by and saw it and although I had never heard her speak, she quoted something from her past..."I would gladly pay to tomorrow for a hamburger today." Her right brain had found a way to convey a message that resided in a brain that was losing its ability to join thoughts together well enough to use the left brain to communicate.
    These are my observations, and not a part of any diagnosis that will be found in medical literature, however it is only on instance of an amazing mind still trying to seek a way to say..."I am in here!".
    After his stroke, my father could explain to me that he did not remember me and that he would forget what I said within an hour of speaking to me. How he could remember this...to say it is amazing and still has science stumped. He was a pilot and could still tell in standard landing jargon that he was approching the runway. This is how he told me he was entering the room. One man who never spoke suddenly became frustrated as I handed him a milk carton and a straw. In a hurry, he said in a frustrated tone."Open it." Where did these words come from...I don't know...but some of the passages of the brain seem to be present at some junctions and are able to be retrained and used for a new purpose. Still, as time passes, one can see that even these junctions are ravaged by disease and fail to be able to conduct thoughts. Still, I held it as a way to communicate although it was not a normal right brain communication. My father could still remember every card he had played and beat me a poker consistantly. The brain is still amazing and it fights to remain present in life. I respect those family members who do not run from those people who are aging and actually set up a form of communication that works. It can be a handshake to a hug or just sitting in the room together. It still works as communication.
    Thanks Meg.

  19. I think you may be smart in suspecting a contamination factor in pick's disease. I know in California in the 50's, we were told to go indoors on some days because the testing that was being done in Utah was being spread by the wind and was traveling South. I know many men were allergic to the many innoculations that they had to take as they went over seas. I know that the transformers and electrical currents were not considered as dangerous as they are today. Their is no end to the different types of contaminations that the service men were open to. The hulls of ships were lined with asbestos...for years...so, you might be right about contaminates. Ni

  20. Hi Meg,

    my mom was diagnosed with picks disease about 2 yrs ago. she was 56. we have problems with her drinking too many fluids (water, soda, tea). my dad has to shut the water off before they go to bed, because she will be up every 5 minutes getting a drink & going to the bathroom. the doctor tells us she could eventually die if she doesnt stop. do you have any suggestions?

  21. wow. we didn't have that problem. my dad would eat or drink anything in sight, but for some reason he wouldn't get water from the tap. and he didn't go overboard if it involved getting a drink out of the fridge. (but if it was just sitting on top of the table, he'd drink it.)

    first of all i'd say that this is probably just a temporary phase. my dad's eating everything in sight (including the food on his neighbor's plate and the cat treats he found lying around) lasted for probably a year. he went up a couple pant sizes, in fact. but once that phase was done, we had the opposite problem of getting him to stop long enough to eat something. he's since lost all the weight he gained plus some. so each of these weird things they do is just a phase and at some point you'll probably look back and say, "do you remember when mom used to drink all the time?"

    that doesn't solve the problem, obviously, but sometimes it Does help to put a present problem into a larger perspective. :-)

    i think turning off the water is a great idea. perhaps your dad could keep it off during most of the day as well. this might mean doing the old california "if it's yellow, let it mellow. if it's brown, flush it down" routine on the toilet. but it's possible that if your dad was able to do this even for a few weeks. your mom might start getting the idea (and oddly enough, it seems like though they're losing their memory they can also still "learn" some small things) that the faucet doesn't work any more. if so, you could try faucets on full-time again and see how she does.

    your dad could hide a container of water in a closet or something for those times when they need something to drink. if the water is only on, say, an hour in the morning (showers, toilet, breakfast) and an hour at night (laundry, dinner, etc.) your mom might lose interest in the drinking thing. just a thought.

  22. lol! i just sent your reply to my mom and her reply cracked me up. so i'm including the whole thing here: ;-)

    "Well, for one thing it will pass, it is a stage she is going through. Continue to turn the water off, won't be long and a new problem will arise. They all seem to get into obsessions which eventually move on to something else. Mom (remember the gum chewing of the fellow in Canada. (dad ate 8 bananas when we returned, I thought I had hidden them. I am not buying them anymore."

    hmmm, that reminds me. i need to pull my bananas out of the cupboard where i hid them while my dad was here. andrew kertesz didn't name his book, "The Banana Lady for nothin! ;-)

  23. meg,

    i want you to know that we really appreciate the advice that you give. it is so hard to find people that understand this horrible disease. we feel sometimes, that we are alone.

    I just wonder sometimes if this disease is hereditary. My grandmother had alzheimers they think (now im starting to wonder) and there is a lot of mental illness on both sides of my moms family. I have even struggled with it myself.
    I would hope that my children would not have the burden of this strange illness.
    It would be nice if there were a test that i could take to find out if what my chances were.

    Anyway, back to my mom, sometimes some of the obsessions she picks up we kind of laugh at to keep our sanity, but i really miss my mom. Two years ago, she would cook, clean, put makeup on etc. now, we have to help her take a shower. She is also to the point now, where she is wearing adult diapers. My dad is not old enough yet to retire (he just turned 60) so my dad's mom and my 13 yr old daughter are sharing the job of taking care of her while my dads at work. I wish i could quit my job and take care of her, but i just cant afford it.
    I dont know how she would fair in an adult daycare program. Some people (even doctors & neurologists) dont have a clue what dealing with this disease is like.

    My dad just called me and told me that he ordered "The Banana Lady". I am anxious to read it. Thankyou for recommending it, and letting me vent. lol.

    Tell your mom thankyou for me. She is in my prayers.

  24. from what i've read it is and it isn't.

    someone posted an abstract (or something technical like that) in the dementia support group about the hereditary type. there's a family in italy that can actually trace the disease back something like 500 years!!! (it makes me wonder if, in those old stories where someone would say, "my dad went crazy when he turned 50 and i know i will too" they were talking about picks.)

    but i think it was that same article that said that there's also a type of picks that isn't hereditary. so in the end, the best way to tell seems to be family history.

    my mom seems convinced that my dad's type isn't hereditary, but i've already told my husband that when i turn 48, i plan to make sure my will is rewritten and i've given him power of attorney over me, just in case. if we don't need it, no big deal. but i don't want him to have to go through the financial junk that my mom has had to go through (convincing places that she should be allowed to see my dad's medical records, make financial decisions for him, etc.) i also try to keep in mind that i only have 10 years left. i may get more (or i may get less. we never know when it's our time, after all.) but i figure anything past 50 is an extra gift if i'm not dementing by then.

  25. Hi Meg, just watched your video..... my god I can't stop crying. It was so moving. My Mum who is now 61 has Picks, she was diagnosed 5 years ago but now knowing what I do I think she has had it for a lot longer. When I saw your dad dance in the video it brought memories flooding back. My Mum now only says my name and "tea and biscuits" some times she will say other names but very rarely. I am in the UK and was her main carer until I just had my baby. Now we have a lady live with her (father is ill too). Just wanted to say hello to someone else who knows what this horrible disease is like. xxxx

  26. Hello. I'm trying to watch the video and it seems to stop loading at 1:00. I'm not sure if it's my connection. I'll try again later.

  27. Hello Meg, I felt so alone until I saw your video. My husband has Picks and I suspect he has had it for approx 5 years now. At first I didn't realise he was ill and I started to hate him because he was so horrible to everyone. Now I make allowances. He does the jig as we call it when he is excited or sometimes out of his comfort zone. He had to be sent home from daycare on Monday because they could not cope with this behaviour. We have been married for forty years and he has always been a "moaning minnie" but this illness has exacerbated this to the extent that he is now very racial and shouts and swears at any coloured person on the television. I am Eurasian, so this racial attitude brings back many painful memories of harassment as a child.
    He has a fad at the moment, when he has eaten he asks when it will pass through his body and when can he go to the toilet. 20 to 30 times later I have to say its ready now. He then goes to the loo and tries and comes back and says only wind. Then he starts to press his tummy again the worktop to force this wind out of his body. This really does worry me as he must be doing damage to his internal organs pressing so hard. This behaviour will last for at least 3 hours every single night. We then have the "sun downers syndrome" where he has to watch for the lamp light to be turned on outside our house. We then have the ritual of all the lights in the house have to be turned on and curtains drawn. At 10pm he is ready to go to bed and then has to make sure all the lights and the television are turned off and no one can stay up. Myself and my son have to go to bed with him. We had him diagnosed in January this year but to date he has had no care other than the daycare that he now refuses to attend. My real frustration is that he is at home on his own all day as I have to work full time and no one has ever been to see him whilst he is at home alone. Just this week I have had to leave work 3 times because he was mowing the lawn and I knew this was not safe and he fell over and bumped his head as it was bleeding and he then refused to take any of his morning medication. I have managed to secure some direct payments towards care but it is taking so long to implement. Thank you for this. Just to express some of my problems has helped. If anyone can give some advise it will be greatly appreciated.

  28. hi moggie, thanks for sharing your story.

    i'm going to ask my mom which medications my dad took early on and if she has any other advice for you. in my opinion, you're dealing with the hardest part of the disease right now. it gets better (mostly because they start losing the ability to speak and interact after awhile. but with my dad that "after awhile" took at least 6 or 7 years to get to. if you've gone through 5 then perhaps you're close to the point where it will get better.)

    if you haven't joined the dementia support group on here yet, i'd highly recommend it. there are folks there dealing with all forms of dementia, but the greatest percentage is dealing with picks. there are several other stories of other people going through this there as well. reading through them might help you get some ideas on how to cope. i also HIGHLY recommend reading the banana lady book.

  29. Meg,
    My husband has picks and he was just diagnosed. He is 62, our home burned down and the radical change to our lives accelerated the dementia. My husband cannot sit and relax, he sleeps very little at night, which makes it hard for me to work the next day. Is your dad like that. Does the Dr. give him anything to sleep. I guess what I miss the most is the caring, tender thoughts and things he did. He seems so selfish now and only thinks of what he wants done. Do you have anything like this going on?

  30. hi joyce. yes, my dad gets really agitated. in the morning he's still usually pretty calm, but in the afternoon and evening he pretty much just keeps walking. he can walk in a circle at my mom's house, through the kitchen, dining room then family room. and he'll walk in that circle sometimes until he starts to fall over. then my mom has to force him into a chair so his body can recover.

    he was taking something that helped him sleep, but i'm not sure if he's still on that. i'll send you a personal message with my mom's info. and perhaps you can get in touch with her.

  31. My Dad is 63. He was diagnosed with Picks about 3 years ago. Sometimes it is hard to believe it has only been 3 years. It seems like an eternity. I found your blog today after having Dad disappear for almost 2 hrs. I was online looking for a gps tracking device, or a way to microchip him (I know its sounds like a lost puppy thing). I have read every post, reply and comment on your site about Picks in the last 4 hours. I am drawn to it because my family and I are living it everyday. I am the oldest of 7 siblings. Of the seven, two brothers and one sister live here in the same town. Two of my siblings live in the same state but far enough away that them helping with daily care isn't an option. I have one brother that is out of the country, so really not an option. We are all supportive and talk often, but the bulk of Dads daily care falls on my mom, my sister and I. My brother runs dads business and that is a huge help to my mom.
    I was so glad to read your posts. Unless you have lived this you really can't understand. My dad is also a walker. He thinks nothing of walking to my home, which granted is only a mile from my moms, 3 times in 40 mins ( and back to moms). He has gone thru a few obsessive stages. He currently is obsessed with books. He will pick up any book, write his name in the front (back, middle and several random pages), and who gave it too him (which is usually who he stole it from.) His public inappropriate behavior is eating/drinking from garbage cans. You can't turn you back on him for seconds in a public place and he is dumpster diving for that remnant of a big mac wrapped in a nasty wrapper with a cigarette butt stuck to it. He will drink anyone's Rockstar, beer, soda, water, tea, liquid of any form. Just imagine a county fair, nascar races, potluck in the park..........all these events are temptations he can no longer bear. My mom feels like a prisoner, having to decide to go or not because how embarrassed will she be. I have had full on WWF moments with my dad at car races to wrastle someone's nasty 40 ouncer with chaw spit in the bottom from an almost successful chug down. I am not embarrassed by him, because I would rather wrastle it from him than watch him drink it.

    My mom has chain/padlock around both fridges at her home, the pantry has a keyed lock on it. He was consistently getting in the fridge and drinking the whole quart of hazelnut cofeemate. You would think it would give him raging diarhea.....I have personally seen him chug quarts of coffeemate faster than you can read this sentence. We have finally refilled an empty coffeemate container with vinegar. We totally set him up and left it out where he could get it, he grabbed it and actually ran with it. He chugged it and then spit vinegar loogeys for an hour. He no longer touches the coffee mate container ever. I do believe that you can imprint that something is gross on him still. Its not something I like doing, but drinking coffemate can't be good for him either.....sometimes you gotta think very outside the box and realize that you are not dealing with a reasoning rational person.

    We are currently trying to place him in adult daycare 2 days a week. We took him there and he refused to stay. It is an alarmed facility but not locked down. The director told us she would not keep him without medicating him. So now I take Dad there to "volunteer" twice a week, with the hope in mind that he will eventually be comfortable enough to stay. We "help" cleanup lunch. Dad loves to empty garbage and cleanup. I think he needs to feel like he has a purpose, isn''t that what all humans need? Dignity and Purpose?

    If you have any suggestions on a gps tracking system it would be greatly appreciated.....thanks and it felt good to write this

  32. it really is amazing to share stories. even just reading the banana lady book felt like such a relief to me because i knew that someone somewhere knew exactly what we were going through. sometimes it seems like the worst part of this disease is that no one else seems to have any clue what we're going through. it's an alienating feeling even when the other person *wants* to connect and help and be supportive.

    as far as gps tracking systems, we tried a cell phone that you could lookup online. but that wasn't always very accurate. (accurate to within a mile. :-P that didn't help much when we lost him around a mall and had no idea which shop he had gone into. and it only updated every 15 minutes. ... he could get pretty far within 15 minutes.) if my mom lost my dad somewhere, she'd dial up myself or my sister and we'd run to our computer and look up where he was. then we'd keep checking and calling her to help guide her closer. ... i guess it was like a city-sized game of "hot and cold."

    i think we gave up on that whole thing a year or so ago. my mom still lets my dad walk around the block, and he usually sticks to that. but it makes me really nervous. if someone's garage door is open he'll walk right in. and one time he fell and couldn't get up. the neighbor's whose house he fell in front of had some somehow load him in a truck and get him home. and my dad can no longer speak so they couldn't ask if he was hurt. thankfully he didn't break anything. but at least he no longer wanders out of the neighborhood.

    one thing my mom did was to call all of the local police stations (or maybe just the main one and they spread the word) and alert them to the fact that my dad was in the town, what his disease was called, and where he lived. then when she lost him she'd call them up and they'd be right on it. they were incredibly helpful. and when they knew he had a disease they treated him much better than when they didn't. (my mom was just recounting a story to me earlier today about when she lost dad in a different city and the police were far more of a pain in the butt than anything. so they're not always helpful. but if you can get them on your side preemptively, it helps.)

    i remember seeing something about a tracking device on animals and i always wondered if that would work on my dad. i think it only worked within a certain range, though.

    it sounds like you're still in a pretty early stage of this, which i personally think is the hardest stage. with other diseases it gets worse as you go, but with picks it seems like the most trying time is early on. then the victim eventually stops talking, stops resisting things as much, becomes more docile. there are other issues (like hygiene and bathroom visits) but my mom says they're much easier to deal with than his previous driven behavior.

    oh, i almost forget to talk about day care. we managed to get my dad to go by starting out with a men's group that went on field trips and did other things together. because it was for men, he thought it was just a social group. he didn't seem to get that it was more of a day care situation. he still escaped out the door sometimes and they had to pay extra attention to where he was, but for the most part he rolled with it. then as he got worse he didn't care as much about the men's group and just went because he was used to it. day care was a life saver for my mom. my dad got kicked out of a couple of places because they either couldn't keep him in the building, or he broke all the locks in the building trying to get out. but there was one place that was always willing to help out and it made all the difference. i hope you can find something like that that your dad will be willing to go to.

    thanks for sharing your story. :-)

  33. We found a tracking shoe online (www.gpsshoe.com) It actually looks like something he would wear. I also found a watch that you can poll from your smart phone and gives location within 37 feet. I don't know if he would wear a "watch" so before we go that route I am taking him to Fred Meyers today to buy a real watch and see if he will keep it on with out incident. There is also a watch, that has a blank face dial, it can not be taken off by the wearer. So I did find several options. I even looked into microchipping him like we did our dog. My siblings all thought that this was way to go, but problem with that is chip isn't gps. It just holds their name, address and a secure code to their medical records. Wouldn't work for my dad cuz when he is on the prowl, he doesn't think he is lost, he would never ask for help, he has no idea how much time has gone by, or even any idea he is cold or thirsty. Bottom line is he would wander for 6 hrs and even if it was getting dark or cold I am not convinced he would ask anyone for help cuz he isn't lost. He does still have an incredible sense of direction.

    I do believe it will get easier when he cant talk. just sad to think that you would want someone not to talk. HIs level of resistance is absolutely amazing.

    The daycare place we go to now will not keep him without him being medicated so I go with him to volunteer. It doesn't solve the problem cuz it would be great to just drop him off, but it does give my mom a break and if I am gonna have him, it is very nice to have something to do with him. It is too hard to drag him around on my errands. He steals things, he wanders, just easier to plant yourself somewhere than go. Is sad cuz he loves to go anywhere with you in a car, even if your just going to get gas. He follows everyone to their cars when they leave my moms house. He sticks his head in window to talk to the people in the back and you have a tuff time getting out of the driveway.

    How long did your early stage last? We been in this stage for maybe a year.

  34. I should ask my mom how long she thinks the early stage lasted. I think she said something like 10 years in the post in the dementia group, but I think the worst of it was more like 5 years. But I've also heard of folks who had a much shorter early period. So don't despair!

    One thing that worked with my dad was to give him a list of things to do. He would come over to my house and I would "watch" him, but that mostly meant handing him a list of tasks and making sure he didn't escape into the neighborhood. The list included things like vacuuming, picking up dog turds, sweeping, etc. He would check things off as he did them (sometimes checking things whether he did them or not and other times doing things multiple times even though he had checked them). He would still talk my ear off while doing all this, but at least it gave him something to focus on besides asking me the same question repeatedly.

    When he was no longer able to do the list, then we moved on to dot-to-dots. The higher they went the better. He would draw on those over and over again. So we'd find a few good ones, photocopy them, and then set him at a table to do dot-to-dots. He didn't always get them right, but they sure kept him busy.

    I think my mom had simple wooden puzzles for him to work on when the dot-to-dots got to be too hard.

    There's something about repetitive motion that seems to captivate my dad. Sweeping, vacuuming and mowing the lawn were especially good chores for him because he could just keep going back and forth, back and forth.

    Now-a-days he'll sit in a chair until 2 in the afternoon looking at catalogs and running his finger along the objects, not outlining them, more like counting them by running his finger along each one. He'll do the same objects on the same page over and over and over again. Maybe it's calming to do the same thing over and over again. I don't know.

  35. In all my years of growing up in a household with seven kids, my parents made us do chores on a daily basis. In all those years, I never saw my dad vacumn, empty garbages, empty the dishwasher. He owned a plumbing busines and worked all day and came home. He was good support in all of my moms efforts to train us, but NEVER did he clean. He also now loves to vacumn, empty garbages, put laundry in the correct bedroom. I have him do those things at my house, and my mom does the same when she cleans her house.

    He is obsessed with books. He flips thru the pages repeatedly, he doesn't read them though. Although he still has the ability to read and I have heard him read aloud recently, he doesn't read silently. He steals them from anywhere, writes his name in the front, and then when caught with them declares loudly "my name is right in the front" As sad as it is, it is very curious. My dad will sit and look at the phone book for hours, he also outlines things with his pointer finger. When asked what number he is looking for, it is usually to call verizon to get a new cell phone or he is looking up his business number. I have seen him sit at that for 3-4 hours.

    My mom bought him an ipod. He can't operate it at all. If you turn it on for him he will sit quietly for a pretty long stretch with it. Everyonce in awhile he will ask where the music is coming from. We tell him from that little box in your pocket and with complete amazement he exclaims "all that music in that little tiny box? Whats it plugged into? How does it get in there?" Once you satisfy those questions we don't typically hear them again in that sitting.

    Have you seen your dad intentionally take things and hide them? My dad will take a 2 liter bottle of coke from a kitchen table under the ruse of needing to throw it away. He then hides it behind a picture on the piano. He will only remember it is there for a short period of time. He knows we won't let him drink it. We limit his sugar intake because he has open sores on his arms, head and back. We know it is directly related to sugar intake. It seems very sneaky. He has lost his ability to reason on most things, but when it comes to sugar and to gluttony, he will manipulate a situation and use a lot of reasoning. It is very strange and hard to sort out, cuz the appearance is that he knows exactly what he is doing.

    He took off again today. I found him headed to the family business on foot. I took him to Shopko and bought him a watch. I am testing the theory that he will even where a watch, if we get him the gps watch. He picked on out with a blue face dial (not digital.) It also has the day of the week and the date on it. He can still read time the old fashioned way. He was excited to get a watch, I actually saw some emotion from him today. Very little, but it was something. Gonna see if he will keep it on for a few days and then order the gps one.

    I am gonna get some dot to dots and try them. I have puzzles cuz I have a seven year old. I have tried simple memory games and puzzles in the past with him but he wasn't interested and looked at me like I was an idiot when I suggested kids puzzles. But things have changed, so I will try again.

    Is your family trying to take care of your Dad at home for the duration?

  36. Yeah, what you describe about running his pointer finger along in the book, that's exactly what my dad is doing now. How strange that they'd both do that.

    Yes, my mom is trying to take care of him at home. It's much easier now than it was. She worries that if she puts him in a nursing home, he'll be there so long that she's left with nothing. When he was originally diagnosed they said he probably only had 6 years left. That was 11 or 12 years ago.

    My dad was sneaky. I can't think right now about what he did (I'm sure it will come to me) but I remember us talking about how strange it was that he couldn't decide between two choices for lunch, but he could do something else sneaky that seemed a lot more complicated to us. It's weird.

    I did notice that music seemed to help for awhile. I'd just put the music player on while he was doing something and it seemed to calm down his agitation a bit.

  37. Hi Meg:
    I'm so happy to have found your blog. My 53-year old brother in law has just been diagnosed this past Monday with Pick's Disease. I'd never heard of it before and have been trying to read everything I can find on it. It doesn't sound pretty. His doc says 2 - 8 years to live and the family thinks he has had it for at least two years and probably longer. Needless to say, we are all devastated as any family would be including yours when you got the news about your dad.

    Right now my bil is very forgetful and gets very angry and frustrated easily. He live two hours away from me so there may be other things that my husband and I are not aware of. His wife works full time and it will be a challenge for her to care for him but I know she will want him at home with her as long as possible.

    This site is very helpful and I hope you continue to post. Your mom certainly has her hands full. This is a terrible disease. This follows us losing my husband and bil's father to ALS in 2002. That sure wasn't pretty either. What devastating diseases.

  38. hi andrea. i'd highly recommend the book titled, The Banana Lady. it'll give you a much better sense of what's going on. (and if you get it and read it soon enough, you can wrap it up as a christmas present for your bil's wife. ;-) our family found that even though we'd already gone through much of what the book mentioned, just reading it helped my mom, myself and my sister feel validated -- like someone else out there, a doctor no less, actually knew and understood exactly what we were going through. i think one of the hardest parts about this disease is just that people really have no clue what you're going through as a caregiver.)

    i haven't written as much about my dad lately because he's at a point right now where he's pretty docile and therefore less extraordinary. he sits quietly in a chair all morning tracing pictures in catalogs and all afternoon he walks around the house. he's ground his teeth down to little nubs, but he won't sit still in a dentist's chair nor will he open his mouth to get work done. he wears diapers and there are occasional accidents, but that's probably the worst of it these days, which is far better than the times when my mom had to deal with police or upset neighbors because of something he'd done.

    your bil is probably at the worst point in the disease -- when he still seems mostly normal, but is behaving oddly. that's when outsiders think you're being silly when you say he has a problem but then they get upset with him when he does something uncouth or abnormal. this is the point when the caregiver probably needs the most support and receives the least. :-\ i'd encourage you to be a listening ear and to do what you can to help your bil's wife find a means of getting oversight for him while she's at work. my mom found a local eldercare program (like daycare for kids, only it's for older folks or mentally disabled folks) that had a men's group once a week. they went on trips together and did activities. because we pitched it to him as a "men's group" and not a babysitting sort of thing, he rolled with it and it was a relief for my mom to not have to worry about him while she was at work. my sister and i took over other days of the week. (and my mom was only working part time.)

    i have several other posts about picks. just lick on the picks disease link at the bottom of this post to see more. i hope it helps. :-}

  39. Hi Meg, We have just passed the 10 yr anniversary of my Dads death from Picks Disease. He was in his 60s but had suffered since his mid 50s. The last couple of years were spent in a local home as he was becoming a danger to himself and others. He had been acting strange for quite a while and by some act of fate I was in the waiting room of my local doctors for a normal appt, reading leaflets on table and there was one on dementia.. it had 5 lines about Picks disease and I went cold and each word described my father. I then made the awful phone to to my mum and told her that I thought this was what was causing the man she had married for 30 yrs act so strange. He wasn't secretly drinking, he wasn't disappearing having an affair, he wasn't speaking inappropriately to woman as he didn't love her, he didn't mean to eat so much or so fast. In someways it was a huge relief.
    The doctors we spoke to hadn't even heard of the disease and after insisting on tests they told us he was a very sane man who had just spent 20 mins clearly talking about his long service in the Navy and how proud he was of his only child's recent degree. It was only when we explained he had been in the navy and 19 for national service over 30 yrs ago and had 3 children that they agreed to send him for scans on the brain. It was a constant fight till finally we found a consultant who agreed with us and the scan. He made such an impression on us that when my father passed away his brain was given to him for medical purposes, something they are desperate for.
    Dad spent his last yrs in a home, not really knowing us but could work out the 8 digit code to get out the door. We last saw him on Christmas day 2001, he was getting everyone singing, pouring out the drinks and even remembered some of our names, a truely beautiful day. For a treat they were allowed out to the local pub and on his way home dad had a heart attack out of the blue. It was a way to go I think he would have wanted, after a good night , out in the open under the stars, rather than alone in a hospital bed at a stage of being force fed and highly medicated.
    One thing i wish i had done more was video dad, his smiles were always the same and he loved to whistle and sing even when he didn't know who i was.
    Remember Grief is the price one pays for love....

  40. Thanks, Emma.

    My mom has heard of other Picks victims who died quickly of a stroke or cancer. She's wished the same would happen with my dad, but instead it just seems to be dragging on. I think if we occasionally had lucid moments with dad, it would be different, but, as my 14 year old son pointed out, "I've never known Grandpapa, have I?" And he hasn't. My dad really hasn't been himself since before my son was even born. It's such a strange conundrum to be in, where your loved one is still alive, but very much gone.

    I'm glad you all had such a great final day with your dad. I often try to remember back to the "good old days" with dad. I like when my mom and sister and I get together and remind each other of what my dad used to be like so long ago. There are even times when he was already afflicted that we can look back on and laugh. But now he's just a shell. He hasn't spoken in several years. It's really sad to see him this way.

    Thanks for your story and your words of encouragement.

  41. I have not been on the blog in awhile. I was rereading all the posts, I haven't posted in a year. Holy cow time flys. Alot has changed with my dad and our family. My husband, two youngest children, and myself have moved in with my parents. This is to help my mom with Dad's care. His level of care has changed alot just since August. He now wears briefs (diapers) all of the time now. He is obsessed with cell phones. Always wants to know what your number is and what kind of cell phone it is. It is the only thing he talks about, other than if you actually give him a cell phone, then he will have a more normal conversation. But you can both be sitting in the same room talking to him on the cell phone and he is asking you if you are coming over. I don't know how my mom has done it alone for this long. It would be difficult to deal with him alone and also the lack of companionship for my mom. It definitely influenced our decision to move in. We have been here for a very short time admittedly, but my dad is constantly asking how I am getting home. When I say this is home, he just has a blank look. Every once in awhile we will get a real genuine smile or look. Those are amazing but a sad reminder of how much he has changed and how "flat" he is. Mom does medicate him now on a daily basis. It is the only way he is amicable enough to get along with. You can't make a 200 lb full grown man do anything he doesn't want to. That includes showering, brushing teeth, basic things. I don't know what stage we are in now? There has been so much change, I often wonder.

  42. lol! that's kinda cute. :-}

    yeah, it is amazing how much they change. and you often don't realize it because you're so in the NOW of what you're dealing with. sometimes when we feel like things are bad, we remind ourselves of how they used to be and we feel much better. ;-)

    it sounds to me like you're just a bit past midway, but you know, though we've met some people who are going through very similar situations, there is still so much variation that who really knows? we felt like dad had leveled off for such a long time that this was going to go on forever, then within a few months he became drastically worse. then he leveled off there for a long time. and there doesn't seem to be any rhyme or reason to when he remains level and when he gets worse. it's a weird, weird disease. ... but i do like the cell phone story. that's classic! it's stuff like that where you can at least laugh a little. and i think laughter is the best medicine for picks caregivers. :-D

  43. Hello everyone - I am Ian Faraday (62 years old) from Sheffield in England. I happened upon your website whilst searching, yet again, for some more information on Picks. My wife Elspeth was diagnosed with the disease five or six years ago. She is now 59 years old. In the early stages we thought her rather unusual behaviour was due to the menopause but after she had her MRI scan Picks was confirmed. I had no knowledge of the disease - neither did my doctor or anyone else I knew, though medical people did understand 'fronto templar lobar degeneration.' She began by talking a lot - she was always a good story teller, particularly at the dinner table but she became very 'boring'. She then went on long walks, bringing home dozens of milk bottles, which she carefully washed and stored away. She was once brought home in plastic handcuffs because the railway police had found her walking next to the railway track into the city centre! Then every bird feather she found was brought home and put in drawers. Then all sorts. Drawers in the house were filled with items she picked up. She opened and shut curtains, drew blinds, put lights on and off at all times of the day. She turned the cooker on and off when no one was looking. She developed an obsession with going to the toilet dozens of times a day. She now has no conversation - what there is can be summed up in about three short sentences, one of which is, "They call me Ellie Spelly, jokingly." I think this dates back to her school days. She has some paid-for care at present but the government, in it's wisdom, has changed the goalposts from three years ago and some of the funding (don't know how much yet) is to be withdrawn soon. Having read all your blogs I know you understand just how difficult it is to look after someone with this illness and how necessary it is, if possible, to have some sort of 'break' from it. She has also become incontinent and is often brought back from her outings to be 'changed'. She spends her time at home doing simple jigsaws (not much else) and when she finishes one she gets up to go to the toilet, every time. We have to stop her when it gets too frequent as she can spend most of her time straining and doing nothing! I am sitting with my IPad at the top of our stairs now as this has been happening all evening. As we know, if we can get a little rest, we are better equipped to cope but quite often Elspeth will get dressed at 3 or 4 in the morning and ask to go for a drive. She eats well - too well! We too have to hide or lock food away, as some of you do. Elspeth was a jeweller - she made our wedding rings - and she painted lovely pictures, some of which hang on our walls. All she does now, if we can get her to do it, is colour in circles for about two minutes. I have read that Picks has a span of two to ten years. She is well in to that now and the deterioration is obvious. What happens after ten years, I don't know. Just have to wait and see. Anyway, thank you Meg and all for listening! We are not too far away from each other in many respects.
    With love from an interestingly snowy Sheffield, South Yorkshire, England (snow in April?)

  44. This kept my dad busy for awhile as well. So did dot-to-dots.

    Now-a-days he just sits flipping through catalogs, not that he can tell what's on the pages, we don't think. He just runs his finger over the pictures.

    My dad was diagnosed 12 years ago last month. And my mom thinks he clearly had it at least 3 years before that (and there were little signs that it had started even before that). I think one of the biggest struggles for my mom hasn't been the care, but not knowing how much longer she's going to have to keep doing this. If she knew it was one or two more years, I think she'd feel like it's manageable. But when you don't know if it's going to be another 5 or 10, then it just feels like an impenetrable weight that will never be lifted. (I don't know if a weight can be impenetrable, but it still seems to fit well with what I'm trying to say.) ;-)

    My mom sleeps in her own room with a noise maker these days. That way if my dad gets up in the middle of the night, she doesn't hear him and can keep sleeping. Sometimes there's a mess on the floor that she has to deal with the next day, but at least she got some sleep. I don't know how she keeps him from coming into her room and bugging her, though.

    If you haven't read the Banana Lady book yet, I'd encourage you to get that. It was written by a Canadian doctor and we found it to be a real encouragement, just to know that someone out there understands both emotionally and medically what we're going through.

    Thanks for joining us, Ian. :-}

  45. Thanks for your reply Meg! Good to hear from you. Nearly midnight and I can hear Elspeth upstairs, wandering and singing tuneless songs, as usual. Just off to try and settle her. Warmer day today in Sheffield - snow has all gone! Hooray!
    I will continue to read the comments from our friends. Night!


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