Pick's Disease

[slmercer08]

My family has really been affected by this since 15 months ago i was an all A student and had a scholarship to go to college and now i'm stuck at home.

[slmercer08]

thank you for your response. The specialists i have seen are neurologists and psychiatrists. I was hospitalized at Duke University in NC for 13 days and Presbyterian in NC twice for 25 days. Both hospitals came up with no new ideas or answers.The only thing they can think of is depression. I thought this made since at first, except this was the best time in my life. I still went along with the depression diagnosis. I tried atleast 25 meds and ECT. Nothing worked and my memory is getting worse...

[barefootmeg]

@slmercer08 I would highly recommend that you read the book The Banana Lady by Andrew Kertesz He's a doctor and he's had a lot of experience with Picks Disease. He says that the disease is often misdiagnosed as either Alzheimers, depression, or various other possibilities. The fact that you've been diagnosed with depression raises red flags. You can get the book on Amazon and when you're done, you might want to take it with you to doctor's visits.

[barefootmeg]

@slmercer08 YouTube is making it difficult for me to get a link to my book review to you. So I'll post it here with spaces to see if I can get YouTube to take it. Just remove the spaces: barefootmeg.multiply.com / reviews / item / 22

[slmercer08]

@barefootmeg  thank you for the link!

[slmercer08]

hi, my name is sara. I'm 18 and I have been suffering from an undiagnosed illness for 15 months. I have had hundreds of tests done and no one know what is going on. It started with behavioral and memory problems and I also forget how to do things such as occasionally forgetting where periods go in sentences or making gramatical errors. now i have been suffering from severe memory problems.I was wondering what drs you went to to receive this diagnosis since it is rare?

[barefootmeg]

@slmercer08 hi sara. my parents were living in elgin, illinois at the time of my dad's diagnosis. have you seen a specialist that knows about the fronto temperal lobe? they often deal with head trauma cases (either due to an accident or a stroke). they should be able to help you.

[omeyemeye]

I just watched this video for the first time. My name is Tia Willin. My husband, Ryan, passed away on 9/10/09. Cause of death was listed as "respitory failure due to Pick's Disease." He was 39.

Ryan's first symptoms appeared late in 2004. I wondered how your dad is doing now. How is your mom holding up? How are youall doing? It's a tough disease, one of the toughest. You'll all be in my prayers. You're not alone.

[barefootmeg]

@omeyemeye Hi Tia. My dad is still living at home with my mom. She regularly proclaims how much easier he is to take care of now. He has less of a "will" so it's easier to control him. He no longer tries to escape the house. He mostly walks in circles & eats anything in sight (including dog food or pills if they're laying around). He doesn't speak at all any more. The constant stream of questions before was part of what was so hard to handle before. So he's worse, but easier to deal with.

[marinetwobe]

I can relate to this video because my brother has pick's disease but he is only 29 years of age. We found out this year and mainly my mom is caring for him, but the whole family are also joining in his care. It is very hard to deal with, but we stick together because we are family. I think it would be a great idea to put a name tag on my brother because he also wanders. I haven't thought of that yet. Thanks...

[barefootmeg]

@marinetwobe wow, 29! that's young. i'm so sorry for you all. 50 was hard with my dad. by 29, that's too early. that's one of the horrible things about picks is how early it hits.

yes, a nametag might help not only in case he gets lost, but i found that people responded a lot better to my dad when they realized there was something wrong with him. otherwise they were very indignant about his behavior (to the point of calling the police many times).

[hollyeburne]

@marinetwobe I am really sorry that your brother and your family are going through this at such a young age. My husband (57) was diagnosed with FTD (similar to Pick's disease) 4 years ago. I would love for him to wear a shirt with 'Excuse me, I have dementia". People have more patience & understanding when they know. I would also like to see those with dementia & their families continue to shine their light without embarrassment.

[missukeepsafe]

Very well done and accurate. My mother died 18mths ago of Picks disease. I wish I had been able to find simple information like this in the begining.

[mjrchapin]

There comes a time when the family must think of itself; he is oblivious to his suffering and his disease. There are facilities that can take this daily burden from them.

[geordo2001]

Its hard too because you feel guilty over being angry over the different behaviors. (You say to yourself "after all it's not the person with the diseases fault.") I hope your Mom realizes she is a great woman and its human to feel these emotions.

Your father seems like a very dynamic individual. It's got to be so hard to see this happening to him.

This is an exeptionally well done video, are you a professional caregiver or videographer? If not you certainly have the talent for it.

[barefootmeg]

@geordo2001 D'aw! Thank you very much. *blush* I'm neither a professional caregiver or videographer, but at the time that I made this I very much wanted to try to help our family and friends understand what we were going through. I've considered doing another video as a follow up. My dad is Very different now. He doesn't talk, walks a lot and after awhile starts to lean over, and is constantly moving his mouth. It's very evident now that something is wrong with him.

[djkurvy]

Thank You for this.. I am in nursing school and I will be thinking about your dad whenever I test or Assess someone, for the rest of my life! Great job!

[kattoo13]

is this hereditary?

[barefootmeg]

yes and no. according to the Banana Lady book (you can see my review of it on my site) there's a family in Italy that can trace Picks Disease back in their family for 50 generations or something crazy like that. on the other hand, there are other cases that seem to be entirely isolated. so there's apparently two forms of Picks - one is hereditary and one is. cross your fingers that your family member's is the second kind.

my site: barefootmeg(dot)multiply(dot)c­om/reviews

[mark7smith]

not strongly inherentable

[mezcalyne]

my mom was just diagnosed two days ago, and I hate to think about how long ago the symptoms went unnoticed.

[Dramat1x]

can you have it at a 14 year old age.?

[barefootmeg]

i think the youngest i've heard of this happening to someone was at 20 years of age. there are other things that can cause some similar symptoms, though. picks is something happening in the front of the brain. aspergers, autism, and several other diseases also happen in the front of the brain, resulting in similar actions on the part of the victim (single mindedness, odd social behaviors, etc.) but i'm no expert. it would definitely be worth looking up.

[Denver1928]

any age but mostly between 40-60. There's also something called Nieman's pick's disease which only effects children but I'm not too sure what the differences are.

[2upenny]

LOVE THE VIDEO THEECHO

[2upenny]

im 52 and have picks ,im one of the lucky ones it has been 5 years ,and it is progressing very slow .i have tried so hard to find some one like my self .that can communate,and talk about the changes we are going through ,but it seems theres no one left,im very lucky.

[tvalerianopereira]

i am curious: how was it diagnosed?

[passport287]

My pastor's wife was diagnosed with Pick's about 2 years ago....it is very sad to see someone digress so quickly to the place that you must almost deal with her as you would a child. It is very hard for my Pastor and his family as well...

Thanks for the information!

[HuiaBird]

Thank you so much, a loved one was diagnosed yesterday .... I'm so incredibly sad. We are about to lose a most beautiful soul

This video is invaluable xox

[mishimasword]

My father in law has had Picks for about 6 years now and we can relate to your father in every aspect. The strain on my 80 year old mother in law is enormous and the feeling of helplessness as we watch him slip further away from us saddens us all greatly.

[drashishvyas]

very very informative, i really don have words to apprieciate your work, and the humble cause, its adorable....

[Halochick86]

Very imformative, thank you.

[newmommy52009]

My dad just got diagnosed with Pick's a few days ago... I'm still doing research in trying to figure out what may happen to him in the upcoming days... I feel your pain and frustration. His personality has completely changed and seems confused often. He is 52 years old.

[Griffandlaynasmom]

My mom was diagnosed with Picks disease 7 years ago. She is now 60. How is your dad doing?

[newmommy52009]

He's doing okay.... starting to say really rude things in public and act out in strange ways. We got him into an adult day care program, but he escaped on the first day. My mom is hiring someone to come stay with him during the day. How is your mom doing? does she still live at home?

[thedot12]

im a guy with some problems that i have come realize are manir campared to so many i admire this mothe and wife and care giver becouse lets face it weather ad or picks the person taking care of them has many roles my adopted and dad adopted 16 kids some with alot of essues she has a 24 hour job by the way im adpted as well and can say dont take what god gives u for granted walk and realize without your arm acting funny is a gift not a right

[tammyandevie]

My husband has Pick's. He is only 40 years old. He is in a nursing home. He is non-responsive, unable to move, speak, etc. It's very hard seeing my handsome active husband of 16 years lying there not even knowing he is in this world. He was in the hospital recently for 10 days because of pneumonia. It is so great to know we are not alone in this very scary journey. Thanks for sharing!

[Janetrenner]

My husband was diagnosted with Pick Disease 10 yrs. ago. He is now 67. We have been on a roller coaster ride every since. I have lots of stories to tell. We have laugh and we have cried. I lost my husband years ago and am now taking care of a child. He remains at home with us. Hospice has now stepped in to help me. Until now, my 3 daughters have been my main support. Thanks for the great video.

[vlonp]

extremely informative

[snowXstripe]

My husband has picks disease and it help me to know that other people have alot of the same probles with it. my husband wants me to do everything he can't and gets very mad when I don't just jump to it. He is always takeing things an puting things in a different spot and will say I did it. Thanks rbcf

[organicdan]

I visit a man with Pick's Disease in a nursing home. He can still sing fold songs but that is about it. Dimentia is very tough on everyone.

[shelleytimmins]

This is fantastic. Thankyou so much for putting this on!

[2inspire]

That's amazing. I cannot thank you enough. My mother also has this and I spend more time explaining what my mother has to them, when I just really want someone to understand and support me accordingly. This video wil be an excelletn resource for me to show my friends what this disease truly is. Thank you. Thank you. thank you. It is nice to not be alone sometimes when it comes to this disease.

[mudylafeet]

God bless you, my mom has this.......

Excellent video

[rainydog]

Excellent video. My wife has pick's disease.

[stephielynn02]

I enjoyed your video.

My dad died from Pick's disease 4 years ago. He had ALS along with the Pick's so he had some additional symptoms, but a lot of the things you describe sound very familiar.

I pray for your continued strength...