Hello, My name is Donna and my daughter Elizabeth(Annie)Capehart .She began showing symptoms of this desease at 16 and was diagnose after a long hard year of testing and uncertainty,the diagnosis came in Oct 2003 at the age of 17,at that time she was given 2yrs to live.It has been as they said it would be,but has not taken her away from us yet,She is now 20yrs old and fighting all aspects with possitive attitude and never once complains as if she doesnt have it although it has effected every inch of her being,she has both parts the Bulbar onset and the Limb onset.When i see her never complaining and still wanting and doing the things she loves in a limited fashion,this gives me my strenght.I joined this site because i think its one of the most eccential and powerful ways to communicate with other people in these situations that we never had before.We can share our stories and help each other with just smallest to the biggest things.Also to get to find out whats happening in the Advocacy field in which i try to be a part of as much as i can.If we are all informed as to what we need to do in this field can you imagine the size of Army we could amass,From Stem Cell to the Nation Registry.Well i really just wanted to write a quick note to test the waters here as i am new but felt very comfortable writing.I am here for general disscusion on anything in these matters.Please feel free to contact me.
Thank you,
Donna Capehart