In this post, I want to talk about people and groups who are spreading the word about FTD. FTD is still a relatively unknown disease and it is people on the front lines and in the trenches who are doing good work to spread the word about FTD. Many people believe FTD patients have little insight into their disease. I am here to tell you there are a growing number of people with FTD who are well aware of their disease and going to great efforts to spread the word about FTD.
For those of you who don’t know, there is a wonderful chat group at The FTD Support Forum. We meet on Tuesdays and Fridays at 2:00 p.m. central. My user name on the support forum is Mermaid. Any of you who have FTD and are able to communicate or have a loved one who can help you communicate, I encourage you to join the FTD Forum. There is a lot of support and good information at the forum. Our chat group has many friendly folks who are waiting to welcome you with “open arms.”
If you want more information about the chat group, join the FTD Forum and send a private message to Mermaid.
Also, many people who have FTD are doing wonderful things to spread the word about FTD. John who has FTD is very involved with the Alzheimer’s Organization. He has been working with his local chapter and has recently been to Washington to speak to Congress about pre- senile dementia and FTD.
Tracy Mobley has written an article as a guest blogger this month on AlzheimerSpouse.com about what it is like to live with FTD.
Susan Grant has finished her film Planning for Hope. I really encourage everyone to go to her website, FTD-The Other Dementia. She needs volunteers in all areas to help her with film distribution.
In addition, there are several people with FTD who have blogs and websites. If anyone has an FTD/Neurodengerative Brain Diseases blog or website and I haven’t put you on my blogroll, please let me know.
In the next six months, I am planning to have a place on the virtual world, Second Life, for people with FTD, other Neurodegenerative diseases, chronic pain and those who are terminally ill. More news on that later.
There is a Webinar on Thursday, April 29th. It is Free Webinar Cognitive and Behavioral Issues in PSP. CBD and FTD with Dr. Brad Boeve. It is from 8 to 10 pm EDT and you can register at this link. Some of the members of our chat group are patients of Dr. Boeve’s and I’m sure he has some valuable information to share.
Anyone who is doing projects to let people know what it is like to live with FTD or focusing on the lives of FTD patients please contact me.
I will keep you posted with updates about what is going on in the FTD world.
Tags: FTD, living with FTD
I am dying 
2010-04-27 at 13:12 |
Thankyou for your emails re FTD chatroom.
I would like to continue to receive them.
I have attempted to launch 2nd life (as Persephone Birdsong) but an error notice comes up saying True color 32-bit is necessary and the only display settings on this computer are 16-bit or 24-bit!
Perhaps I may try at the library computer sometime.
Thankyou for the interesting information in this article.
2010-05-19 at 17:57 |
When I was first diagnosed with bvFTD I found very little subjective information about the earlier stages of the disease. I have since found a couple very good blogs, and started one of my own. It is good to see there is something positive going on.
Every case is different, and the stage at which we are diagnosed varies so greatly it is a wonder there is any cohesive information out there at all.
Thanks
2010-05-21 at 23:08 |
Thanks for the comment. I followed your link to your blog. It’s great! I loved the photos of the Blue Racer.
You have a different variant than we are used to, and you have a remarkable insight into your condition. You’re helping others to understand, too.
Thanks!