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I picked up a book Brain on Fire at airport about a girl in her 20’s who all of sudden is acting very odd, like she has dementia, schizophrenia, psychosis, bipolar disorder…it turns out she had ovarian cancer that was cured previously and it led to a spike in her white blood cells and it took quite some time for Doctors to figure this out.  She was also having seizures.  Reading her actions reminded me of my Mom and while not the same scenario this author did the make the point of saying if her parents had not kept pressing doctors she could have ended up in mental illness facility or nursing home.  It made me think this could happen to others, and that is pretty scary as many don’t have a lot of money or great health care.  The author was at very good hospitals in New York and they could not figure this out for longest time.  It is scary to think some could be institutionalized that could actually be cured.  It made me sad too, I don’t think a lot of testing was done on my Mom but I really don’t know…I would suggest everyone keep very good notes of all lab work done with results in case a case like this could ever come up – especially with a younger person being diagnosed with dementia.

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My Mom has been on countless drugs that supposedly will “help”.  Risperdal is one I know she has been on and I just read an article in newspaper that says Johnson & Johnson has to pay $2 Billion in false marketing of this product – they targeted elderly, disabled and young children.  They generated worldwide sales of $24.2 billion from 2003-2010.  The US Gov has been probing Risperdal sales practices since 2004, including allegations the company marketed the drug for unapproved uses.  The FDA approved the drug for “the management of the manifestations of psychotic disorders”.  Since that market is limited, J&J sought to sell Risperdal for Bipolar Disorder, Dementia, modd and anxiety disorders.  Then in 2006 they added marketing to children.  J&J will plead guilty to a misdemeanor criminal charge over misbranding Risperdal for uses not approved by FDA, including treating elerly patients with dementia.  Omnicare is the leading pharmacy provider for nusing homes, and they received kickbacks for promoting the drug to nursing homes.

What makes me mad about this goes back to Day 1 of my dealing with my Mom’s disease.  They want to throw you on a ton of drugs and they all have side effects and really no proof of working and you try to stand up for your loved one and cannot fight the system, they just give them what they want to and then you hear of stories like this — the FDA did not even APPROVE the drug for dementia use!!!!!  Greedy people decided it would be good to generate more sales and market to nursing homes and my Mom was (and may still be on this, i am going to call and find out) for what reason?  To make some rich.  I am disgusted.

I was asked this question by a reader of my blog, and the honest answer is I don’t know.  She was diagnosed back in the summer of 2006 and it is 4 years later.  I have to say I believe she is doing better now that at first but I believe that to be because her medications have finally been figured out as to what works best for her.  She is able to talk and walk and is semi-independent.  The problem with me knowing where she stands is she has had probably 15 doctors since being diagnosed.  The original doctor who diagnosed her doesn’t go to her home, and since we are medicaid only she only sees the house doctors.  I wish she could have stayed with the same doctor as it would be interesting to see a medical evaluation from same person.  Most of the doctors who have seen her do not understand Pick’s disease and she is routinely misdiagnosed, which I blogged on in the past.  I don’t know if this helps at all but I wanted to share.

I am starting this blog to tell my Mother’s story regarding her battle with Pick’s Disease. This is a disease that is not very well known. It is a form of frontal lobe dementia that differs from Alzheimers in that sufferers usually don’t have memory loss at first, but rather have problems maintaining simple plans, familiar activities, etc. It is as though they cannot put 2+2 together any longer.

Picks disease strikes younger adults, 40-50 years on average.

My Mom, Connie, was diagnosed with Pick’s disease when she was 59 years old.  This was after years of trying to find out what was wrong, going to different MD’s and psychiatrists.  For awhile the psychiatrists diagnosed my Mom as Bipolar, which we all felt was odd as she hadn’t had prior symptoms.  She was given various medications that were supposed to help manage the symptoms.  The symptoms did not go away.  The medicines only made my Mom like a Zombie, with rigid arm motions when walking.  Finally, after a year or longer I found a younger psychiatrist who actually took some time to listen to me and he had my Mom admitted to the hospital and a brain scan performed.  Based on the results of the brain scan, he diagnosed her with Pick’s Disease.  At the time, there was less information online that there is now on this disease, and one site I found told about a husband dealing with his wife having Picks, and the description blew everyone who knew my Mom away – the symptoms were eerily similiar.

As this diagnosis started to sink in things fell apart even further for my Mom.  Her husband (not my Father) didn’t want anything to do with her and all the responsibility of taking care of my Mom fell on me.

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