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Shelley

New member
Joined
May 15, 2007
Messages
1
Reason
Loved one DX
Country
US
State
Ca
City
Manteca
Hi I am new to your site I just registered 5 minutes ago my father was just diagnosed yesterday with ALS I have so many quetions. Can someone give me some good referances on facts about Lou Gehrigs Disease please. Thank you and My prayers are with you all.
 

Jamiet

Senior member
Joined
Nov 27, 2006
Messages
616
Reason
Learn about ALS
Country
US
State
Louisiana
City
Carencro
Shelly,

Sorry to hear about your dad. There are many threads on this forum, particularly in this general discussion room you can research. You need to do alot of research, as ALS is a very difficult disease to deal with.

YOu should make sure that you get your dad registered with the local ALS association and also the MDA (They are two separate - you must register at both).

Your dad is automatically qualifed for SS disability, there is no waiting period with ALS.

I don't know the details of your dad's progression? Does he have Bulbar form (throat, speech and swallowing) or limb onset (legs / hands). How long has he had symptoms?

YOu can research ALS on the alsassn.org site. You can get him started on a vitamin regimen and the ALS clinic may have discussed the one and only treatment for it (which gives average of 6 months longer survival), Rilutek.

You will find in your research, that the average survival time is 3 - 5 years from diag, but those numbers can be decieving, esp. if he chooses to vent when necessary. Some on this forum, according to AL have had it for 14 years, so there is hope.

I'm sure you will get more feedback from others, please ask any questions you want, were here to support you.

Regards,

Jamie
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Welcome Shelley. Sorry for your dad's diagnosis. We are here to try to help you and your family through this difficult time. There is a lot of information stored here and if you use the search feature near the top of the page it will help but just ask if you have any particular questions.
AL.
 
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