I also agree with you Punk! I've learned more about Ataxia by joining this support group than any specialist I've seen has been able to tell me. I now find myself teaching my primary care physician what I've learned here. I also believe that they should let us in on what they know, or don't know.
I didn't even know there were Lithium trials in Italy. I agree with Punk and Rose that there should be more, accessible easy to read, info out there and less feel-good stuff. I think there should be a kind of international clearing house besides this marvelous site. N
Cassie was only diagnosed last year, and we were told there was no treatment. But then you do your own investigations on the internet, [rightly or wrongly] and you get the sense that maybe all is not lost. It must be hard for the people who have been dealing with this for years. Do they have genuine hope or despair. I really do hope that they may have found something for freidrichs ataxia, but I don't hear anybody shouting from the roof tops. At the end of the day I am just a scared father and all I am looking for is real hope or not, instead of being somewhere in between.
On the other hand, these people are alive--- which is encouraging. I do not have FA but CA induced by auto-immune disease,it is thought by my chief neurologist. I just read something very interesting, which I will post, on the connection between degenerative diseases of the brain, stress and auto-immunity. I will post this in a few moments on the blog section of this site. I still think a clearing house of ideas and activities in the ataxia world is essential. No one really knows what is going on I understand your fears but hope is powerful too. You know, my parents are Holocaust survivors and at one point, my father was a nano-meter from the end, and a miracle ensued, a casual remark, and he lived. Help can come from anywhere. N
Punk said:
Cassie was only diagnosed last year, and we were told there was no treatment. But then you do your own investigations on the internet, [rightly or wrongly] and you get the sense that maybe all is not lost. It must be hard for the people who have been dealing with this for years. Do they have genuine hope or despair. I really do hope that they may have found something for freidrichs ataxia, but I don't hear anybody shouting from the roof tops. At the end of the day I am just a scared father and all I am looking for is real hope or not, instead of being somewhere in between.
This site has been great Neta and to hear about your parents is truly inspirational .The sheer horror is truly unthinkable. Cassie has sca2 and you think she only has 10 to 15 years to live, but from what I hear about people on here it is possible to slow it down. Many thanks to all