Jan 2, 2010 -- 6:59PM, Mersilkee wrote:

I have frontal temporal lobe degeneration which is  a fatal degenerative brain disease.  I have only found a few people with my illness who are able to communicate with me because of the nature of the disease.  People who have it either have denial of their illnesses with personality changes when they first are diagnosed or people who are able to communicate do not realize they have the disease until it is in it's later stages if then.

Most neuologist's believe FTD is rare and most neurologists believe that a person has to have the symptoms of denial and acting out to have the disease.  I was fortunate as far as obtaining a diagnosis because my husband asked for a brain MRI and took me to a top specialist.

Even so, I found out I have been having symptoms of the disease for five years.

I have tried to go to grief support groups but I find they are mostly for people who have lost someone.

Most people who are dying find a support group for their disease but as I said that isn't possible for me.

Also, I am unable to go out much so I can't physically attend a group.

Thanks for listening

Eppie

blog: Iamdying.net

 

I will certainly be praying for you. May God grant you comfort and peace. Staying in the solution is important. I remember the Doctors gave my Dad six months to live after his phlebitis surgery. He lasted another 20 years. Just take it one day at a time and remember to enjoy the simple things.

Here are some tubes for your journey.

www.youtube.com/watch?v=7tkzc983aE0

www.youtube.com/watch?v=l9K4BKkLaCI

www.youtube.com/watch?v=khrxWs05JSY&feat...

Prayers on the way!

Andy