Finally some good news!

[susantigner]

A while back I posted that my son wanted to do genetic testing. My husband has FTD, PSP and CBD. His disease is not caused genetically as far as the science knows now. I can’t express how grateful I am.

[Dadshelper]

I am glad the test results are what you were looking for. I've never run across any findings where they state the disease is a genetic defect that could be passed from generation to generation. It seems to be more of an abnormality in the Tau protein production.

Ron

[enjoysalud]

theaftd.org/wp-content/uplo...

Hi, my son's father had FTD (DX by UCLA back in 1996). My son when he began to show atypical symptoms of PD, Kaiser Permanente had him genetically tested (2016??) for FTD. The test was C9orf72. It came back negative.

I do NOT know if my son died of PSP. He did not have a brain autopsy at death....the only sure way to know the brain disease. According to Kaiser and UCLA he had the classic symptoms of PSP, but we have no brain autopsy (my regret) .

AFter reading the info published by Penn Medicine (Univ of Penn Center for Nuerodegenerative disease research, Frontotemporal Degeneration Center, and Assoication for Frontotemporal Degeneration) that Robin Riddle sited in your first post on genetic testing........I am now NOT sure. BTW, the publication lists PSP and CBD as types of FTD.

Genetics are much more complicated then what I learned as an undergraduate at UCLA...knowledge marches on, and many of us are left behind.

The Penn publication mentioned three other genetic tests, in addition to what my son Jeff had done. MAPT, GRN,and others. My son was NOT tested for those.

My daughter's husband's brother was recently DX with FTD. If there is a gene, it is now on both sides of my grandchildren's ( ages 22 and 23) parents.

What genes were tested for your son?

I believe, I hope, I trust, that in the next 25 years or so, much more research on genes and brain disease will be known. It will be helpful for all our children and grandchildren.

Los Angeles,CA, USA

[Boyce3600]

I am so very sorry!! I am caring for my husband at home with help and it is expensive, but I am grateful for a Long Term Care policy that we purchased after we both retired in 2014. He didn't want to; we were both in excellent health at that time but we did it and I thank God everyday for it. I include him in as much as I can. I talk to him all the time telling him what's going on; he rarely replies but I feel that he understands. It's very hard to get him out of the house; today one of the caregivers did walk him in the park near our house and we do go to doctors appointments but to me that's not an outing. I'm curious about this genetic testing. How is that done; what kind of doctor would you ask to do that and is it expensive? Are u saying they were able to diagnose him through the testing?? I am not convinced that we have the right diagnosis. I would consider this if I knew that it would tell me exactly what's going on and if the cost was not prohibitive .

thank you and God Bless u and ur family!