Diagnosis

As we were remodeling the house, more and more examples of the changes that were happening with dh became obvious.  One day we were replacing door hardware and he told me that he had to take all the doorknobs back because none of them fit together right.  I took a look, put the hardware together, and installed them on the door.  He was amazed and completely stunned.  "How did you DO that?"  I glossed over the situation, but it was disturbing.  Many days he wouldn't be able to complete anything while I was busy painting.  He made repeated trips daily to the hardware store to pick up 1 item at a time.  He would disappear every time we went to the store and I'd have to hunt him down.  Odd behaviors were piling up in my mind, but I pushed them back as long as we were working and living in our "project" home.

After we were finished with the remodel, I tried to talk to him about the odd things I had noticed.  This was after we got the results from the neurophych back in Oklahoma.  He became furious and refused to speak to me.  That was when I realized that he was probably very concerned about himself.  It is also when I demanded that we find another doctor to do an assessment for us.  I should mention at this time that he has a family history of Alzheimer's.  His mother was diagnosed with Alz back in the 70's,  his brother was diagnosed with Alz in the 90's, and then we found out that his sister had also been diagnosed with "dementia" about the same time.

It took months to get into see the specialist who was recommended to us.  She did the original assessment and we had a family conference.  This is the first time we heard the words FrontoTemporal Dementia.  But she wouldn't commit to that diagnosis and wanted to  do more testing.  Dh had a PET scan to see what parts of his brain were active and which were not as active.  He also had a spinal tap to look for "Tau" in his spinal fluid.  The presence of Tau would indicate a form of Alzheimer's.  Finally, he had more blood work done than I ever knew existed.  He was tested for Legionnaire's disease, Lupus, viral, bacterial, and fungal infections, Lyme Disease, Creutzfeldt Jakob, West Nile and Fragile X.  Some I had heard of in the news;  others I had never heard of.  When we met again, the diagnosis was certain.  FTD.  Then the doctor said, "Do you have any questions?"  What!  We didn't know enough to ask any questions.  Her general overview included that FTD was progressive, degenerative, not treatable, and would "shorten" his lifetime.  She also told us about the symptoms when you lose the Frontal and Temporal parts of the brain.  We were all in shock.  Except for dh.  He just smiled and sat through the entire thing without a question.  Later I asked him what he thought about what the doctor had told us.  He said he thought she was quite nice.  (She was)

We came home and I cried.  Then I started looking for information.  There wasn't much.  I looked at WebMD,  Mayo clinic website, Googled constantly.  It wasn't good news.  I kept reading rare, little research, etc.  This was September 2010.  I also got a lot of floral info - FTD, you know.  But I found a few sites, a couple of universities that had started researching FTD.  Each site led another step forward.  Now, I'm happy to say that there are a great many websites and organizations who support families who are looking for info about FrontoTemporal Dementia.

If you are reading this and need information start at  theaftd.org  It will direct you to many other places where you will find information and people who care and are also going through the same thing you are.  They have been a lifesaver for me..