We are still awaiting results of a recent PET scan, but the neurologist says that, based on neuro-psych testing of where my husband'sloss is and also my husband's NASTY reaction to both Arisept & Namenda, they are pretty sure my husband has Fronto-temporal dementia (FTD). My husband seems to have one of the language types--primary progressive aphasia or semantic. I know this site/board is basically for AD, but hopefully someone else out there has FTD experience and can give some sort of idea of progression. It's hard to make long term plans for managing finances, etc without SOME sort of idea. AD had stages defined. AD info indicates that only approx 1/4 or so of whatever time a person has to live is 'quality' time of any sort. There does not seem to be much of this type of info on progression of FTD. The time frame is the same (2-8 years) as early onset AD, and less with motor neuron involvement (which we think he has), but...that's it. If anyone knows anyone...thanks for whatever info you can provide.
I'm wondering if anyone has any experience with their AD loved one predicting approximately how much time they have? My husband announced during a discussion with two of his sisters and his daughter that he thought he could manage on his own for two years yet and then would need someone to be with him. We talked afterward and he says this is not based on anything beyond a 'gut' feeling. For lack of better information I'm believing his 'gut.'
Also FYI, the issues basically are the same. My husband is now on medical leave from his job and will go on LT disability soon. Thank God we bought that, even though our income will decrease by 1/3...that's better than decrease by 100%.
Some days/weeks are OK and I'm accepting/not too stressed. Some are nasty stressful trying to stay one jump ahead, plan things for him to stay busy at home with things he can do, explaining something for the 10,000th time which just 1 yr ago he would have been explaining to me. Sigh. It's nice that all in this situation who post seem to be so nice and helpful. The sisterhood is great, although the dues are horrendous!
Welcome to my website. I think I have some worthwhile information for you.
There is a couple in our AD support group who are in your position. The husband has FTD, but since there were no groups or support for that type of dementia, they joined the AD group. We have become very good friends with them. The wife has searched high and low and everywhere in between for information on FTD. Her husband was just accepted into a study for FTD at NIH - they are leaving on Sunday for 10 days to go up to Baltimore.
With your permission, I will send her your e-mail address (Your "name" at the top of your post looks like an e-mail. Is that it?), and I am sure she would agree to correspond with you.
This website is all about the emotions involved in "losing" a spouse to dementia, and I can tell you from all of the talks and "cry sessions" I have had with my friend, although it's FTD rather than AD, the emotions are the same.
My husband probably has FTD. The diagnosis is by symptoms mostly. The usual alzheimer's meds either didn't work or made him even worse. Rages at everyone were terrible. For some reason he was always polite to me. I don't want to scare you-but after two years of off the wall behavior he is now in a dementia facility in Port Saint Lucie, Fl. I had to place him when safely became a huge issue. He took off in his car and was missing for over 24 hours before we found him and brought him home. At this time he does not even realize that I am someone who cares about him. There is not a shred of humanity left. I hate this disease.
My husband has had the primary progressive aphasia (PPA) symptom for about 2 years now - only a word here or there and not necessarily the right word. He tries to say things but often can't. THe dr's first thought it was EOAD but not may be leaning toward the fronto temporal - but since he's losing so much weight (over 50 lbs) in the last 10 months and seems to have some pain in his arm (again, he can't really talk to tell me what the problem is), he has to be tested for ALS. Very tiring.
BLUEDAZE, thanks for the info. Scary or not, any info is useful. Will add you to my prayer list as it sounds like you have much more than me to deal with. How long into the disease did this behavior surface?
DILLY, I understand ALS is fairly common with FTD. We have a wonderful rehabilitation facility with therapists who have worked with PPA (primary progressive aphasia). Supposedly with PPA they keep their memories and thoughts, just can't verbalize. My husband also had fine motor issues, so expect when he can't verbalize he probably can no longer type or print (can't really write cursive any more already.) There are some assistive technologies, such as a board where the person points to letters to communicate...we are hoping when it gets to that this type of thing will help.
My husband was first diagnosed with Picks (an FTD), then Primary progressive aphasia in June of 2006. I joined some yahoo groups and met some very knowledgeable people. I will paste the links to the groups at the end of my post. We are in the opposite situation. The results of my husband's neuro psych testing revealed Alzheimer's because he scored low on all 5 areas of cognition.
Dilly and all who posted.
There is a lady named Jeanette who I believe lives in the Atlanta area that posts to the PPA forum that knows a lot about FTD.
FYI re: the FTD support & Picks support @ yahoo: This Pick's Support forum has run its course and is now replaced by the FTD_support forum.
This is a moderated forum and can be found at:
http://www.ftdsupportforum.com/
For (old) members of picks-support, the archives are no longer available on line. If you have any questions you can contact me directly on: gmward99 at yahoo dot com.