My husband of 25 years is only 51 years old, and on November 9, 2009, following a comprehensive neuropsych test, he was diagnosed with dementia, non specific. He has been having lots of dementia type symptoms for the past year, but the actual diagnosis ripped my heart out. On Tuesday of this week, (VA health care is slow) he was given a PET scan. Its hard to understand what they're saying, but with my limited internet research and his symptoms, it appears he has FTD. We are awaiting a VA appt with his neurologist for more specifics, but don't know when that will be. His report said that he has decreased density in the right hemisphere, decreased activity which is associated with the area of decreased density in the right frontal lobe and temporal lobe region. Also some decreased activity associated with white matter tracts around this area, but no significant hypometabolic cortical changes separately elsewhere in the brain The areas of asymmetric decreased activity most promiment are in the riolandic operculum, the inferior frontal gyrus, and the insular regions of the right side. What does all that mean???
Welcome to my website. Let me try to answer your question first, and then give you a more extended welcome. The reason it is important to know the type of dementia he has is because different dementias are treated differently. As you are probably aware, there are no cures, but there are treatments that slow the progression, but not all treatments work on all dementias. To better understand FTD, check out this link -http://www.mayoclinic.com/health/frontotemporal-dementia/DS00874
You can also do a search at the top of this page. Click search. Type in FTD, making sure the topic circle is filled in, and click search again. There are about a dozen discussions.
Basically, what the report is saying is that there is shrinkage in the right frontal lobe region and the temporal lobe regions of the brain. Along with the shrinkage, there is decreased activity in those areas, which will account for whatever symptoms he is having.
It is obvious from your post that you are understandably upset, stressed, and confused. All emotions we understand. You have come to a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". There are 4 sections for EOAD members - two of which focus on the young teens whose parents have EOAD (early onset AD). There is a great section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide. You can go to the top of this page, click on "search", and type in EOAD, making sure the "topic" circle is filled in. All of the EOAD discussions will come up - there are about a dozen of them.
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
It seems from reading your post and doing a bit of googling that the PET scan has shown that his frontal and temporal lobes are affected (decreased activity) and that there is atrophy. The white matter also causes decreased activity in the brain. The scan also didn't show any abnormalities in other parts of the brain such as tumors. The specific areas of the brain you listed are mostly in the frontal lobe area of the brain.
An excellent website for information on FTD is at http://memory.ucsf.edu/ftd/
My husband was diagnosed in Aug 2008 at 58 with FTD. This diagnosis was given after ruling everything else out through CT scans, blood tests, MRI and neuropsych testing. He is on aricept and namenda to try and slow progression; cymbalta and seroquel for anxiety, aggitation, depression and obsessive behaviors. My husband is an exception in that he tolerates aricept and it has helped a bit. A lot of pFTD (people with FTD) have adverse reactions to aricept and it can cause worse behaviors.
I am 51 and we have been married 31 years. You have come to a place to vent, ask questions, etc. Where are you located?
Oh, Nana Jan, how devastating, especially in one so young. You will find others here dealing with spouses with the same diagnosis. There is much information to be found on this site and always loads of support from others who understand what you are going through. You've come to a good place.
Nan Jan = my husband has VA medical too. You are fortunate that they did a PET scan. They will not do it for mine - guess they feel not necessary for diagnosis.
If you don't already, get a copy of each doctor visit, including the radiologist reports and any other testing. You will have to go fill out the form asking for it - we do right after his appointment. You often will find more on that than the doctor says to you. That is how I found out how bad my husband was. After his first neuropsych testing we never had a consult with the doctor. I assumed it was OK until we were at a different VA and they gave him copies of the testing and the doctors early diagnosis. Plus, having them is good to have on hand.
welcome nana jan. so sorry you need to be part of this extended family but that said, its the best place for your upcoming journey with FTD. there are many spouses here with this type of dementia. feel free to vent rant or ask for a hug. we understand what you are dealing with. divvi
Nana Jan, I have known for a while that DH age 56 probably has FTD. Do a search on my threads and you will see what my DH has been up to for many years. He had MRIs last month and nothing showed up. I'm sure that it will be a couple more years with more symptions appearing before we get close to a diagnosis.
My best advice is to keep reading and to do your best to keep calm. I always tell everyone not to get me upset. I tell them that if I "lose it" then we are all in trouble.
Nana Jan, There are many variants of FTD as you will find on the http://memory.ucsf.edu/ftd website. My journey with this disease with this incidious disease ended on March 7th, almost 6 weeks ago. It is devastating. Do you have children, if so how old. Where do you live? Once you figure out what stage your DH is in and what variant he has, you can start to digest what the future may hold. My husband had the Motor Neuron Variant. His body failed him, before the dementia got to bad. Please reach out and hang on. We will be here with you for this journey and long after. Arms around, Susan (from Maine)