As I stated in a previous message, after years of confusion my husband was finally diagnosed last month with FTD at the Memory and Aging Center at UC San Francisco.
I am starting to learn more about FTD, but after reading the fact sheets for FTD and Picks at the Picks Disease web site, I am a little confused about the differences between the symptoms of Picks and FTD. The symptoms listed on the fact sheets at www.pdsg.org.uk seems to me to be the same. I realize that Picks is a form of FTD.
The diagnosis is "FTD." How do the neurologists know that it is not Picks Disease and just FTD?
Being that it has taken 2 years to get my suspicions confirmed and that I was focusing on Alzheimers (which the doctors told me he had), I never really did a lot of research.
I just need some referrals where is the best places to go for more information, and maybe a brief summary of what are the differences between Picks and FTD that is not Picks.
Linda, thanks for the referral to the information about FTD sub-types. Did you find more places on the web that addresses the specific disorders and symptoms of each?
I knew that you've cared for your mom for 10 yrs but had forgotten that it took 7 years just to get an accurate diagnosis. That must have been very frustrating to say the least.
It just my opinion, but I think as more neurologist become familiar with the early stage symptoms and how different they are from Alz. then it would be very helpful to the effected person as well as the family caregiver.
In our case, diagnosis was so confusing and difficult (they called it "atipical Alz Disease") but that the extensive evaluations only began after my husband's cognitive functioning had already become so severe that it did actually resemble Alzh. His short-term memory loss and related Alzh symptoms were not there for years but when he was being evaluated they looked at him as if he were in the early stage. My husband was also not cooperating with evaluation at all until he became even more passive.
It has helped me to understand the difference between FTD and Alzheimers by remembering how each disease is very different at the early stage. At the late middle stage and end-stage symptoms do seem to overlap more.
Cher, I'm so glad you opened this thread. I haven't responded because, as you know, I've been dealing with the shock about my mom's diagnosis, and so I've been trying to goof off for awhile. Let me just share with you and others some bits of information I've learned so far about the "difference between Pick's and FTD " :
Last September, when my moms Neurologist gave me the results of my moms CAT Scan, I was told that she had Frontotemporal Dementia (FTD). I ran home eager to search the internet, hoping I would find a support network. Sadly, when I entered frontotemporal dementia into a search engine, not very much came up. I called her Neuro the next day and told him that I couldnt find any information on FTD, and he told me to try Picks Disease, so I did.
When I entered Picks Disease into a search engine it made matters more confusing for me to find that there are two types of diseases called Picks Disease. The first one is a childhood disease, named after a man named Neimann Pick, that has to do with difficulty with metabolism of fats, and for which there are foundations dedicated to raising lots of money for researching a cure. The Second is the other Picks Disease, the one named after Arnold Pick (bless his heart), the one that my mother has, the one that few people know anything about, the one that is so rare, that it doesnt raise much interest, even among other Caregivers, and there is no foundation dedicated to researching its cure.
The following is a link to a Fact Sheet about Frontotemporo Dementia/Picks Disease
Other than a few articles, which tend to be brief and redundant, most things Ive found on the web, are dry and written in obscure scientific language, regarding research, done by Neurologists who are reporting their findings concerning brain cell anomalies. For a common CG it is all but impossible to make heads or tails of most information available.
So, here is how my moms Neurologist explained it to me:
He told me that FTD is extremely rare, affecting approximately 5% of all people with dementia. He said that,
* Out of 100 people who have dementia, only 1 will have FTD/Picks.
* Of the 100 people who have FTD/Picks, then 99 will present with behavioral problems and only 1 will present with memory problems.
* The remaining 1 person will usually be misdiagnosed with Alzheimers because they have presented with memory problems.
Recently, I saw in my local Alzheimers Association Newsletter that the University of Davis, CA is conducting a study on people with Picks Disease, and was asking for volunteers. I was interested in having my mom be a part of this study, so I called about the ad. The woman who answered the phone, cleared up some of the current confusion about whether they are still calling the disease Picks or Frontotemporal Dementia (FTD) .
She told me, that they are currently studying people who they believe have what she referred to as true Picks disease. She informed me that true Picks Disease is the type which typically presents between the ages of 50-60, and which is marked by a rapid progression of symptoms. However, to add even further mystery to the current confusion, she also told me that even true Picks Disease can present as late as 80 yrs. of age, but that those occurrences are extremely rare.
Regarding what is currently referred to as Frontotemporal Dementia:
Like true Picks, other types of FTD generally present with behavioral problems, however they have discovered that the disease falls into three subtypes which are being categorized by varieties of symptoms, distinguished by the area of the brain affected. If you are interested you can read about here:
For those who have not yet fallen asleep, I just want to say, thank you for allowing me to share, the above information which has been gathered purely by my own limited experience. I have been a CG for my mom for over 10 years, and I have struggled for a good 7 of those years to obtain a diagnosis for my moms dementia. The doctors never sent her to a Neuro in all those 7 years, despite my pleas for help because she never presented with memory problems. Even though information and support regarding FTD is scarce, now that my mom has been diagnosed, I at least have a name for her condition. To be able to name it, and find the information that is available, has been extremely crucial in providing proper care for her. Perhaps this story doesnt strike a chord with many of you, but for those who have taken the time to read it, I hope it has either helped or enlightened you a little bit about the Pick's vs FTD issue. If some of it is innacurrate, I appologize but, I am eager to be corrected. Take care, and God bless.
[ February 18, 2002: Message edited by: ducky ]
I couldn't agree more. Maybe as more research centers such as UC San Francisco Memory and Aging Centers gather more data, then we'll have more advantages of more diagnostic tools and resources as well as more options for treatment.
Thanks for your input.
Considering that fewer people are suffering from Pick's I doubt that they are doing as much research on it as Alz. Also Pick's is generally seen in those under age (anyone under 65 is under age for any of the dementia's) Pick's and EOAD have not quite gotten the attention the more common late onset Alz. has
EA< thanks for responding to my question. Then does that mean that anyone with FTD also has Picks. Although I realize that nothing is for certain until an autopsy is done, I am beginning to see that many symptoms of the different kinds of dementia overlap.
You are also right about the FTD sub-categories still being defined. When Ed was diagnosed at UCSF and I asked if there was a sub-category of FTD they said no, just FTD. Now I believe this may have been due to the point you make about there still isn't very much known about FTD yet.
Actually the current thinking is that which they call FTD is Pick's. So the symptoms for eithoer one would be the same. It maybe that they will find there are other disease involved with FTD but those have not been broken down yet. Some years ago all dementia type symptoms were called Alz. As they began to study the disease they began to break it down more
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