Here's an article on Pick's, one of three types of frontotemporal dementias. http://www.pdsg.org.uk/articles/JDFC-1.htm -Mary

Hi all,

Sorry to butt into all your conversations all the time but, I am interested in what comparisons there are between my wife's characteristics and those described here. She has been diagnosed with dementia and it has been referred to as FTD however, her symptoms don't match with what is described in the text at the links Kim provided. Thanks Kim. I still haven't gotten a final diagnosis from Mayo but they are treating her for possible seizures and or EOAD. She is on Keppra for a couple months to see if she gets better. She has also been prescribed Nemanda. That won't start until the Keppra has been tested.

Please bear with me while I try to learn about all the facits I may be dealing with.

Thanks Joan for the warm wave. Back at you.

Billy G

It seems to me a few years back there was some discussion as to wheather or not all FTD was actually Pick's or if Pick's was just one form of FTD. There is also the possibility that your husband may have been suffering from more than just one form of dementia related disease aznd that maybe why the shunt did help him.

In any case FTDs can be very difficult to deal with as they often involve some serious mood swings.

Hi Chris...

Another source you might try could be

When the Pieces of the Puzzle Don't Fit - the basics of dementia diagnosis (information for the professional provider).

http://www.uiowa.edu/~centrage/pubs/When%20the%20Pieces%20of%20the%20Puzzle%20Dont%20fit.pdf



...

Hi all,

Thanks for your messages, Joan Marie and Jim. To answer your question about treatment: If you can believe this, we were doing everything right by treating Roger with both Seroquel and Zoloft. From what I had learned on internet, and the doctors agreed with this thinking, using drugs commonly prescribed for Alzheimer's would probably be of little benefit for the FTD patient, and could even be detrimental. So, in spite of the fact that we didn't have an exact diagnosis, we were doing everything right! So, we will continue with 25 mg of Seroquel and 25 mg of Zoloft as we have been.

Both of the neurologists stated that if we had come to Mayo first, they would not have advised getting a shunt as they felt his problems were totally due to FTD. When I described that many physical symptoms have improved to a degree since shunting, they were totally amazed. So, God must have been guiding us to St. Cloud before we struck out for Rochester, huh?

While at Mayo, neither doctor mentioned Picks. I might be wrong, but I'm not sure that words FTD and Picks are used interchangeably. I think Picks can be a form of FTD, but FTD is not necessarily Picks. I have known one woman with Picks, and Roger doesn't behave like her at all. But, I know these neurodegenerative disorders effect each person differently.

Dr. Knopman did suggest a book for me, so I've ordered that. The book is "What If It's Not Alzheimer's?: A Caregiver's Guide to Dementia" by Lisa Radin. He said that this book is especially good for patients with FTD.

Well, that's about it for this day. Thanks for your support and for sharing your knowledge.

Love, Chris

Frontal Temporal Dementia...

There is a discussion of frontal temporal dementia in this issue of Connections found here

http://www.alzheimers.org/pubs/conv09n4.html and the issue is available for for free from ADEAR

at http://www.niapublications.org/adear/shopdisplayproducts.asp?id=3&cat=Diagnosis%2FSymptoms

also look here

http://www.dcmsonline.org/jax-medicine/2000journals/February2000/lewybodies.htm

http://www.parkinson.org/dementiasame.htm



...

Sorry I missed you yesterday, Chris... was having a little trouble getting my own update through. Persistence prevailed though!

So, you have indeed secured a sound diagnosis for your husband through the wonderful folks at Mayo. As disappointing as that news must be, at least you and your family now know what you are really working with.

As you might imagine, I immediately looked up "fronto temporal dementia" and saw that it's commonly referred to as Pick's Disease. I also noticed the condition does not typically respond to cholinesterase inhibitors used to offset AD symptoms but that treatment may rely heavily on SSRIs. Out of curiosity, what was Mayo's treatment plan since their site indicated each person is treated individually?

To answer your question, Cher50 was here "before my time" so I don't know where she and her husband are at the moment. I do know there is a website highlighting Pick's Disease available. You might want to check into our Chat Room during the evenings and look for Doug. He and his wife endured this disorder and he set up a very informative website. I suspect he may also have other "connections" for you too. You may reach that Chat Room by going through the ec-online homepage and the evening Chats begin around 9pm EST.

Please keep in contact with us, we're all on this road together.
Warmest regards... ...Joan Marie

Hi Joan Marie,

Thanks for your kind message. My plan was to sit down this afternoon and update you all on the outcome of our Mayo visit, and your message arrived just minutes before I plunked down! So, thank you for thinking of me.

Yes, we have a diagnosis, it is: fronto temporal dementia. No, I'm not happy with the diagnosis, but I know it is the right one. All along I've felt that Roger was experiencing more symptoms than simply normal pressure hydrocephalus, but yet he didn't quite fit the Alzheimer's profile. The end result will be similar to Alzheimer's, I understand, but the beginning stages are different, so that explains the difference in symptoms.

We had a wonderful experience at Mayo and I would recommend that facility to anyone. Everyone we dealt with was so professional, but yet very caring. And they are the absolute height of organization, which works well for me.

I'm dealing with the diagnosis very well and actually feel relieved, as I've beat myself up questioning the timing of the shunt, etc. So now I can know that I've done the very best for my husband, and the kids and I don't have to second guess ourselves.

The kids are having a tough time coming to grips with the diagnosis, as I think they were holding onto hope that Mayo would be able to provide some type of magic bullet. Since I'm in the trenches each day, I'm obviously further along with my grieving than they are. Our daughter and her family were home this weekend and that was a real comfort. And our son will be coming home one day this week, so I'm looking forward to seeing him, too.

I guess we'll make it; what choice is there? But this certainly isn't the way one anticipates their retirement years. I've read through some of the older posts and saw that Cher50 experienced a journey very similar to ours. I have written to her privately, but have not heard back yet. Do you know how she and her husband are doing?

Thanks again for the support, and I'll await hearing of experiences any of you might have with FTD.

Love, Chris