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I am wondering if anyone has information that they would like to share with me on dealing with pick's disease, you see my husband at the age of 45 has been diagnosed with this, we have four children that are finding it difficult to deal with. I am finding it difficult to deal with this. LOOKING FOR HELP!!
 
Posts: 2 | Registered: July 02, 2007Reply With QuoteEdit or Delete MessageReport This Post
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For those of you not familiar with Pick's Disease and how it differs from other dementia-producing illnesses, here is a quote from Bob Hoffman's Pick's Disease Page

quote:
Pick's disease differs from Alzheimer's disease in several ways. First, the two diseases produce different abnormalities in the cells of the brain. Pick's disease is marked by "Pick bodies", rounded, microscopic structures found within affected cells. Neurons swell, taking on a "ballooned" appearance. Neither of these changes appears in Alzheimer's disease, and the pathology of Alzheimer's disease (plaques and tangles) is not found in Pick's disease. Secondly, Pick's disease is usually sharply confined to the front parts of the brain, particularly the frontal and anterior temporal lobes. This contrasts with Alzheimer's disease, which is more widely distributed. The two diseases also produce different neurochemical changes in the brain.

These basic differences between Alzheimer's disease and Pick's disease mean that the two tend to produce somewhat different symptoms. In contrast to Alzheimer's disease, in which early memory loss predominates, the first symptoms of Pick's disease are often personality change, and a decline in function at work and home. Personality change may take the form of apathy and indifference toward customary interests, or of disregard for social decorum and for the feelings of others. Poor social judgement, inappropriate sexual advances, or a coarse and jocular demeanor may be seen. Function declines because the patient simply does very little, or displays confusion and poor judgement. Patients may not be highly forgetful. Often times the patient performs well when directed to do something, but cannot undertake the very same thing independently. What is lost is the ability to initiate, organize, and follow through on even very simple plans and familiar activities.

As the illness advances, difficulties with language become common. Patients become unusually quiet, and when they do speak it may be slowly, in brief sentences. They may labor to make the sounds of words and their speech may sound distorted. Some become extremely apathetic -- they may sit for hours doing nothing at all unless prompted to do so by another, while others become extraordinarily restless, and may pace unceasingly. Some patients are hypersexual, and some, like a small child, may place anything they pick up in their mouths. Gluttonous eating occurs in some cases. Attention span is poor; patients seem to be distracted instantly by anything that they hear or see. Later in the disease, patients usually become mute. Restlessness gives way to profound apathy and the patient may not respond at all to the surrounding world. Eventually, they enter a terminal vegetative state.

Pick's disease usually begins after age 40 and is less common after age 60. It is a disease that invariably worsens. The average course is about 5 years, but it ranges from 2-15 years. It is rare, accounting for between 1% and 5% of dementia.


Theresa, for more information and support specific to Pick's disease, here is a link to a page of links to information! I hope that it helps you to understand the disease so that you can help your kids understand what's going on with their father.
http://www.bhoffcomp.com/coping/picks.html#links

If your kids are older, it might be good to surf some of these sites with them to answer their questions. I was particularly taken by a story written by a doctor who is a Pick's Disease patient. His rare account of what it feels to be on the INSIDE of the disease is very illuminating. http://www.pdsg.org.uk/caregiver_stories/picks_from_the_inside_out/

The links all vary from detailed information and illustrations of the brain and areas affected to real-life stories from other families of Pick's patients. I hope reading some of the links and information will help you and the kids to cope with this cruel disease.

This message has been edited. Last edited by: Moms_Buddy,




"She ain't heavy; she's my mother."
 
Posts: 3089 | Location: SE LA | Registered: August 12, 2004Reply With QuoteEdit or Delete MessageReport This Post
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Welcome, Theresa. First, let me extend my sympathy to you and your family. Pick's Disease is arguably one of the most cruel degenerative brain diseases as it strikes middle aged adults in their prime years of careers and raising families.

The onset of this disease takes people by surprise, especially kids who don't understand why their parent is behaving so tempermentally and unlike the loving parent they once knew. Although the onset of Pick's Disease and Alzheimer's Disease are almost a generation apart, much support can be found at AD outreach programs. I would strongly suggest that you and your kids attend some local support meetings to gain some understanding and support in living with this terrible disease. Please help them to understand that their father's behavior in no way is representative of his love for them! He didn't ask for this affliction and I am sure would gve anything in his power to spare you and his kids from confronting its cruelties.

I hope that you'll stop in often. Looking forward to getting to know you. Warm {{{hugs}}} to you and yours! Smile




"She ain't heavy; she's my mother."
 
Posts: 3089 | Location: SE LA | Registered: August 12, 2004Reply With QuoteEdit or Delete MessageReport This Post
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http://www.nlm.nih.gov/medlineplus/ency/article/000744.htm I hope this link works, first time I have tried this in the forum.


--Life is what happens to you while you're busy making other plans.--
 
Posts: 323 | Location: California | Registered: June 03, 2007Reply With QuoteEdit or Delete MessageReport This Post
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Hi Theresa, I'm so sorry to hear about your husband. If you go down three more blocks from Daily Challenges to less know dementias click on that and there are a few postings there...
You have come to the right place for support. All dementias seem to have common symptoms... so you will be able to get good advice on problems that will arise. Plus, the compassion of the people here will warm your heart and keep you going. You are not alone... we all are here for you one way or the other.

This message has been edited. Last edited by: christine J,


--Life is what happens to you while you're busy making other plans.--
 
Posts: 323 | Location: California | Registered: June 03, 2007Reply With QuoteEdit or Delete MessageReport This Post
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HI Theresa, welcome honey.

I am so sorry to hear of your H diagnosis, I agree with Bunny, that you must be very afraid and concerned for your family.

Hang on, someone will come on and help you!!!!
 
Posts: 941 | Registered: February 12, 2007Reply With QuoteEdit or Delete MessageReport This Post
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Theresa F welcome in I dont know much on the entirety of this disease but I just wanted to offer a shoulder for you, you have got to be devastated by this diagnosis and a little scared yes? Well sweetie you are not alone in this feeling Im sure we can learn much together with the help of these fine people here and get you a support system going as well as some ideas for you.
So you hang in there and someone with some experience will show up shortly Im sure Wink
For now heres some reading for you....

http://www.ninds.nih.gov/disorders/picks/picks.htm

http://www.wrongdiagnosis.com/p/picks_disease/symptoms.htm#symptom_list

Theresa heres one more site that gives you listings of support groups maybe there is one in your area.
http://www.ftd-picks.org/?p=caregiver.supportgroups

This message has been edited. Last edited by: Bunnys_grl,


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Well, butter my butt and call me a biscuit.
 
Posts: 4676 | Registered: February 07, 2006Reply With QuoteEdit or Delete MessageReport This Post
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