FTD case from the US

[Intelnublett]

I'm relatively new to this forum but am glad I found it! I am 47 years old and have had FTD for at least 7 years now. I live in the US and have noticed that FTD seems to be better known in the UK and Europe and I have to explain to my doctors and others what FTD is and how it affects me. I think I have been lucky in that I have been able to live a somewhat normal but albeit fractured life so far but I am starting to feel that the disease is starting to progress faster than before. I find it more and more difficult to explain how I am feeling to my family and doctors and even to myself sometimes. I think the worst part of FTD is I am better able to identify what is happening to me!!!

 

[Shedrech]

hi @Intelnublett
I wonder whether this site may be helpful to you ... I appreciate it's UK based but I guess you can contact them from the US, although attending any meetings may be a commute too far
http://www.raredementiasupport.org/

 

[nitram]

Perhaps your doctors need a refresher on FTD
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5761910/
to enable them to understand your problems and maybe suggest a way forward.

 

[canary]

You might find The Association of FTD, which is based in US, helpful.
I think it gives details of resources in different areas of US too.

https://www.theaftd.org/